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Lungs under a cloudMaters, Gemma

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Lungs under a cloudPsychological aspects of COPD

Gemma A. Maters



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The research reported in this thesis was funded by the Lung Foundation Netherlands. The study was conducted within Graduate School for Health Research SHARE (University of Groningen, University Medical Center Groningen).

http://books.ipskampprinting.nl/thesis/527918-maters

Layout Bianca Pijl, www.pijlldesign.nl, Groningen, the NetherlandsCover design Bianca Pijl, Printed by Ipskamp Printing Enschede, the NetherlandsISBN 978-94-034-1371-6 (print) 978-94-034-1370-9 (digital)

© Copyright 2019 Gemma Maters, Groningen, the Netherlands

All rights reserved. No part of this thesis may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, without prior written permission of the author, or when appropriate, of the publishers of the publications included in this thesis.


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Proefschrift

ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen

op gezag van de rector magnificus prof. dr. E. Sterken

en volgens besluit van het College voor Promoties

De openbare verdediging zal plaatsvinden op

woensdag 13 maart 2019 om 14.30 uur

door

Gemma Amarante Maters

geboren op 5 januari 1980te Delft


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PromotorProf. dr. R. Sanderman

CopromotoresDr. J.B. Wempe Dr. G. Pool

BeoordelingscommissieProf. dr. A.V. RanchorProf. dr. J.E.W.C. van Gemert-Pijnen Prof. dr. P.U. Dijkstra


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ParanimfenSandra BrouwerCharlotte Ulenreef


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Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Table of contents

General introduction

Predictors of all-cause mortality in patients with stable COPD:medical comorbid conditions or high depressive symptoms

Discrepancies between patients’ and partners’ perceptions of unsupportive behavior in patients with COPD

Problems in cross-cultural use of the HADS: ‘No butterflies in the desert’

Identifying patients with COPD in need for psychosocial care through screening with the HSCL-25 and the CCQ Mental State

‘With the best intentions’: why a psychological intervention study for patients with COPD failed to include enough patients

Cognitive-experiential therapy in patients with COPD; a protocol

General discussion

SummarySamenvattingAbout the authorDankwoordSHARE- previous dissertations

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Chapter 1


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The purpose of this thesis is to explore psychological aspects of experiencing and handling Chronic Obstructive Pulmonary Disease (COPD), as well as options for psychological support. With our title, ‘Lungs under a cloud’ we express the interplay between COPD and psychological issues. The disease brings psychological problems about and is influenced by psychological issues negatively. In this thesis we look into perceived distress and the consequences of distress, as well as its relationship with social support. Furthermore, we investigate needs for psychosocial care and feasibility issues concerning a psychological intervention study. In particular, this thesis discusses: a) the relationship between comorbidities (including depressive symptoms) and all-cause mortality (Chapter 2), b) the relationship between psychological distress and perceptions of spousal support (Chapter 3), c) the cross-cultural use of the Hospital Anxiety and Depression Scale (HADS; a questionnaire which we intended to use in our intervention study, until we found out there were problems with it, Chapter 4), d) the screening of an endorsed need for psychosocial care (Chapter 5) and e) difficulties encountered in the implementation of a psychological intervention study (Chapter 6). Also, we developed a psychological intervention protocol, to encounter several central issues in coping with COPD (Chapter 7). This introduction starts off with background information on COPD; symptoms, course and medical treatment options. Subsequently, a short overview of research concerning psychosocial problems in COPD patients will be presented, as well as available research concerning studies on psychological support. At the end of this introduction an overview of the chapters of this thesis will be provided.

COPD: definition, prevalence and symptomsThe official definition of COPD, according to the Global Initiative for Chronic Obstructive Lung Disease (GOLD), is “common, preventable and treatable disease that is characterized by persistent respiratory symptoms and airflow limitation that is due to airway and/or alveolar abnormalities usually caused by significant exposure to noxious particles or gases” (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). In plain English: pulmonary damage causes breathing problems and this damage is caused by smoking or exposure to other harmful substances. Next to tobacco smoking or environmental exposures, the so-called ‘host factors’ (such as genetic factors) seem to play a part (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). Although COPD is considered to have treatable characteristics (Houben-Wilke et al., 2018), it is a progressive disease. A diagnosis of COPD is typically suspected in patients with dyspnea (breathlessness), chronic cough or sputum production, with or without exposure to risk factors. To confirm the diagnosis of COPD, spirometry, a medical pulmonary test that determines the level of airflow limitation, is needed. Earlier, a fixed criterion of airflow limitation was used to diagnose COPD. Recently, the Global Lung Function Initiative (GLI) of the European Respiratory Society (ERS) introduced z-scores, based on age dependent reference values (European Respiratory Society, 2017). Four categories of airflow limitation severity are recognized, as indicated by the Global Initiative for Chronic Obstructive Lung Disease; the GOLD categories (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). They are ranging from GOLD category 1, indicating mild airflow limitation, to category 4, indicating very severe airflow limitation. The correlation between the GOLD category and physical symptoms or impairment is, however, weak (Han et al., 2013; Jones, 2009).



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In the Netherlands, over 350.000 people suffer from COPD (Snoeck-Stroband et al., 2015). It is estimated that worldwide 65 million people suffer from COPD; in 2015 three million people died of COPD, mostly in low and middle-income countries (WHO website). This implies that COPD is an important cause of death in many countries. COPD is frequently accompanied by other diseases (comorbidities) that may influence symptoms and the course of the disease (Anecchino et al., 2007; Chatila, Thomashow, Minai, Criner, & Make, 2008; Patel & Hurst, 2011; Schnell et al., 2012). The disease typically becomes apparent after the age of 40 (World Health Organization, 2017). In earlier decades, COPD patients usually were men. Nowadays, in western countries more and more women are diagnosed with COPD. An important reason for this change is that more women started smoking during the last decennia. Women with COPD usually experience more severe symptoms and are, on average, diagnosed at a younger age than men (Snoeck-Stroband et al., 2015). COPD patients are treated with pharmacotherapy to alleviate symptoms or treat complications. In addition, they are advised on smoking cessation, physical exercise and/or are encouraged to participate in pulmonary rehabilitation, if applicable. However, non-adherence to such advices or treatments is a well-known problem in COPD patients (Blackstock, ZuWallack, Nici, & Lareau, 2016). The most salient symptoms of COPD are dyspnea (breathlessness), cough and sputum production (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). Especially dyspnea is described as a very unpleasant symptom; patients feel as if they are grasping for air or breath through a straw. Other frequently occurring symptoms are fatigue, decrease in muscular strength and/or weight loss. Symptoms may be mild up to severe, depending on factors such as the stage of the disease and also the activity level of patients. Ultimately, because of the progressive character of the disease, patients may become impaired in all of their daily life activities. For instance, walking the stairs or riding a bicycle may increase dyspnea, doing home appliances or working may become impossible, sleep interruptions may frequently occur and worsen fatigue during the day. In addition, most COPD patients experience episodes of increased symptoms from time to time (exacerbations). These exacerbations may last for days or weeks and patients may seek (urgent) medical advice or care to deal with them. Exacerbations negatively influence disease progression and should be adequately treated to minimize the impact and to prevent future exacerbations from happening. The latest GOLD revision (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018) aims at more precisely discriminating severity of COPD by adding symptoms (low versus high) and number of exacerbations per year (0 or 1 versus 2 or more).

Psychosocial issues and options for psychological supportDue to the burdening and, ultimately, life-threatening character of the disease, COPD may induce strong emotions in patients, such as feelings of anxiety, suppressed mood, helplessness and hopelessness. Depression and anxiety disorders are frequently reported in COPD literature (Hanania et al., 2011; Kunik et al., 2005; Maurer et al., 2008) and are associated with an increase in the experienced disease burden. Some patients are afraid to suffocate or lose control. Panic attacks may occur and patients may avoid particular situations or activities, which may provoke distress or an increase in symptoms. Some COPD patients experience traumatic events, such as

Chapter 1


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treatments or strong emotions during a hospitalization. A state of suspense has been found in COPD patients, because of the uncertainties the disease brings about. In Box 1.1 some interview-quotes are presented from two studies conducted by two psychology students, under our supervision, to illustrate how patients with COPD perceive and experience their disease (Hendriks, 2011; Mayer, 2011). A relationship was found between depression in patients with COPD and mortality in some studies, but not in all (Almagro et al., 2012; Groenewegen, Schols, & Wouters, 2003). Because most studies were performed in hospitalized patients, we investigated the association between co-morbidities (such as depressive symptoms) and mortality in patients with stable COPD. Besides emotional problems, taking part in social activities may become difficult for patients suffering from COPD, because of the breath-related symptoms themselves, and/or because of sensitivity to allergen stimuli such as tobacco smoke. Therefore, social isolation is a risk factor in patients with COPD, who try to avoid the increase of symptoms. Concerning their social context, some COPD patients experience a lack of understanding from their acquaintances, leading to even more avoidance of social situations and/or to negative emotions. Patients involved in a relationship may experience role changes, due to their disease. Relational problems may occur in the partner relationship, sometimes worsened because of sexual problems experienced by patients or partners. On the other hand, a partner may positively influence adherence to medication or rehabilitation (Fischer et al., 2009; Rand, Nides, Cowles, Wise, & Connett, 1995). The way partner support is best provided has received little attention in COPD literature, as well as the way patients perceive partner support. Therefore, we look into spousal support in this thesis. Based on the aforementioned emotional and relational issues patients with COPD may face, one would expect that many patients might experience a need for professional psychosocial support. However, it seems that the number of COPD patients that receive a psychological treatment are generally low. Therefore, in the literature concerning psychological aspects of COPD, screening for distress is encouraged (Garvey, 2012; Maurer et al., 2008; Obradovic et al., 2012); however, an association between distress levels and a need for psychosocial care has not yet been established in the literature concerning patients with COPD. We therefore investigated the association between a need for psychosocial care and distress (measured with two questionnaires). Cognitive behavioral therapy appears to improve psychological outcomes in patients with COPD, according to two systematic reviews on this issue (Coventry & Gellatly, 2008; Farver-Vestergaard, Jacobsen, & Zachariae, 2015). However, it should be stated that intervention studies in this field until now encounter problems, such as low inclusion numbers. Therefore, more research into psychological interventions is called for (Baraniak & Sheffield, 2011; Dowson, Kuijer, & Mulder, 2004; Farver-Vestergaard et al., 2015; Rose et al., 2002). This thesis discusses inclusion and dropout issues in an intervention study, as we experienced such issues in our randomized controlled trial.



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A female COPD patient (75 years old):

My pulmonary disease belongs to me. I learned a lot from it. It gave me confidence in life˝.

A male COPD patient (71 years old):

I feel down increasingly. This is related to my pulmonary disease. I know for a fact that I will die of

it. My body tells me too, and I usually listen to my body. The end of my life may be far away, I don´t

think I will die tomorrow. Up until now, I thought I would be fine if I just wouldn´t give up. But

lately, I do no longer believe this anymore. If this worsens, what will happen when they try to help

me? Will it be fine, or a long-drawn-out process? But I do not long for death. If I die of this disease, I

will suffocate. Either my heart snaps, or my lungs. That is not a happy thought. To fall asleep and die

will not be the case, as I had hoped for. That’s hard. At difficult moments, I tend to think of death. On

the other hand, sometimes a beautiful day arrives. I get my mobility scooter and drive as far as I can. I

feel a bit free, but it never lasts. Then I have to go home again and the worrying starts again … and the

worrying worsens˝.

A female COPD patient (53 years old):

And about the black mood, I think one will lose faith. Sometimes the disease makes me feel down. But

I don’t want to be bothered by it every day. And about the fear, I do recognize is. But not every day. It

surprises me, when I am busy with my daily activities. I tend to think: do I have to live the rest of my

life with this disease? Sometimes it is just a feeling. I do not talk about the fear. I don’t know how to.

I’d rather keep this to myself. Generally, I do not talk about my disease to others. Only if they start

talking about it. This disease is an adventure. But I will continue and will not lose faith˝.

Box 1.1 Three patients with COPD about their disease (parts of interviews)

Chapter 1


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Overview of the chaptersIn this thesis we look into several of the issues described in the preceeding paragragh. In the current paragraph we introduce the research presented in this thesis.Chapter 2. The incidence of medical and psychological comorbidities in patients with COPD is high and an association between medical co-morbidities and mortality was demonstrated in some studies, but not in all. Most studies were performed in patients who were hospitalized. Therefore, we investigated the association between co-morbidities and mortality in patients with stable COPD. Survival analyses were performed with data collected in stable COPD patients and illness parameters, including acknowledged survival predictors, were included in the analyses.Chapter 3. Because of the disabling character of the disease, patients with COPD may experience a high need for support from their spouses. However, only a few studies have looked into partner support in patients with COPD. Research in patients with other diseases showed the association between patients’ wellbeing and provided support, as perceived by patients, may be either positive or negative. The aims of our study were (1) to investigate if discrepancies between patients’ and partners’ perceptions of overprotection and protective buffering are associated with distress and (2) to evaluate if the direction of the differences between patients’ and partners’ perceptions is associated with distress.Chapter 4. In this chapter, the cross-cultural use of the HADS is discussed. This is a widely used instrument to screen for anxiety and depression, also in COPD research. At first, we intended to use the HADS in our research on a psychological intervention. Then we found out there where four different Dutch translations of the HADS and there were problems reported in HADS literature. We decided not to use this questionnaire in our intervention study and look into the cross-cultural use of the HADS instead. Problems are reported in literature, such as discrepant optimal cut points and inconsistent factor-structures. The aim of this chapter is to examine whether these problems could be due to the translation and cross-cultural use of the HADS. Chapter 5. In the literature until now, high levels of distress (symptoms of anxiety or depression) are reported in COPD. Screening for distress is advocated, as a means to identify patients in need for psychosocial care. However, to our knowledge, no earlier research has focused on the association between distress levels and a need for psychosocial care. Therefore, we examined the association between the screening capacities of the Hopkins Symptoms Checklist-25 (HSCL-25) and the Mental State scale of the Clinical COPD Questionnaire (CCQ). In addition, several characteristics of patients with a need for psychosocial care were investigated.Chapter 6. In chapter 6 we present the issues we came across in our psychological intervention study. This study was prompted by a need for more high-quality research into psychological interventions in patients with COPD, in the literature. Because of the problems reported in COPD literature, we paid extra attention to approaching and motivating patients. Still, we encountered inclusion and dropout problems. Therefore, we were no able to report on the effectiveness of the psychological intervention. Instead, we report on the process and problems encountered during performing the study and make recommendations for future psychological intervention studies in COPD.



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Chapter 7. In this chapter we present our protocol for a cognitive-experiential intervention. We describe the rationale for the intervention, as well as the manual for psychologists. The cognitive- experiential intervention is targeted at learning patients to get more control over; a. the physical consequence/ symptoms of the disease, b. emotions or perceptions regarding the disease and c. the consequences of the disease regarding relationships. Cognitive and experiential techniques were chosen to realize those goals.Chapter 8. Offers the general discussion; we reflect on our overall findings, clinical implications, methodological considerations and future research.

Chapter 1


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ReferencesAlmagro, P., Cabrera, F. J., Diez, J., Boixeda, R., Alonso Ortiz, M. B., Murio, C. Working Group on COPD, Spanish

Society of Internal Medicine. (2012). Comorbidities and short-term prognosis in patients hospitalized for acute exacerbation of COPD: The EPOC en servicios de medicina interna (ESMI) study. Chest, 142(5), 1126-1133. doi:S0012-3692(12)60613-8.

Anecchino, C., Rossi, E., Fanizza, C., De Rosa, M., Tognoni, G., Romero, M., & working group ARNO project. (2007). Prevalence of chronic obstructive pulmonary disease and pattern of comorbidities in a general population. International Journal of Chronic Obstructive Pulmonary Disease, 2(4), 567-574.

Baraniak, A., & Sheffield, D. (2011). The efficacy of psychologically based interventions to improve anxiety, depression and quality of life in COPD: A systematic review and meta- analysis. Patient Education and Counseling, 83(1), 29-36. doi:10.1016/j.pec.2010.04.010.

Blackstock, F. C., ZuWallack, R., Nici, L., & Lareau, S. C. (2016). Why don’t our patients with chronic obstructive pulmonary disease listen to us? The enigma of nonadherence. Annals of the American Thoracic Society, 13(3), 317-323. doi:10.1513/AnnalsATS.201509-600PS.

Chatila, W. M., Thomashow, B. M., Minai, O. A., Criner, G. J., & Make, B. J. (2008). Comorbidities in chronic obstructive pulmonary disease. Proceedings of the American Thoracic Society, 5(4), 549-555. doi:10.1513/pats.200709-148ET.

Coventry, P. A., & Gellatly, J. L. (2008). Improving outcomes for COPD patients with mild-to-moderate anxiety and depression: A systematic review of cognitive behavioural therapy. British Journal of Health Psychology, 13(Pt 3), 381-400. doi:10.1348/135910707X203723

Dowson, C. A., Kuijer, R. G., & Mulder, R. T. (2004). Anxiety and self-management behaviour in chronic obstructive pulmonary disease: What has been learned? Chronic Respiratory Disease, 1(4), 213-220.

European Respiratory Society. (2017). GLI-2012 excel individual calculator. Retrieved from http://www.ers-education.org/guidelines/global-lung-function-initiative/spirometry-tools/excel-individual-calculator.aspx.

Farver-Vestergaard, I., Jacobsen, D., & Zachariae, R. (2015). Efficacy of psychosocial interventions on psychological and physical health outcomes in chronic obstructive pulmonary disease: A systematic review and meta-analysis. Psychotherapy and Psychosomatics, 84(1), 37-50. doi:10.1159/000367635.

Fischer, M. J., Scharloo, M., Abbink, J. J., van ‘t Hul, A. J., van Ranst, D., Rudolphus, A., Kaptein, A. A. (2009). Drop-out and attendance in pulmonary rehabilitation: The role of clinical and psychosocial variables. Respiratory Medicine, 103(10), 1564-1571. doi:10.1016/j.rmed.2008.11.020.

Garvey, C. (2012). Depression in patients with chronic obstructive pulmonary disease. Postgraduate Medicine, 124(3), 101-109. doi:10.3810/pgm.2012.05.2553.

Global Initiative for Chronic Obstructive Lung Disease (GOLD). (2018). Global strategy for the diagnosis, management and prevention of COPD. Retrieved from http://www.goldcopd.org/.

Groenewegen, K. H., Schols, A. M., & Wouters, E. F. (2003). Mortality and mortality-related factors after hospitalization for acute exacerbation of COPD. Chest, 124(2), 459-467. doi:S0012-3692(15)33325-0.

Han, M. K., Muellerova, H., Curran-Everett, D., Dransfield, M. T., Washko, G. R., Regan, E. A., Lynch, D. A. (2013). GOLD 2011 disease severity classification in COPDGene: A prospective cohort study. The Lancet Respiratory Medicine, 1(1), 43-50.

Hanania, N. A., Mullerova, H., Locantore, N. W., Vestbo, J., Watkins, M. L., Wouters, E. F., Evaluation of COPD Longitudinally to Identify Predictive Surrogate Endpoints (ECLIPSE) study investigators. (2011). Determinants of depression in the ECLIPSE chronic obstructive pulmonary disease cohort. American Journal of Respiratory and Critical Care Medicine, 183(5), 604-611. doi:10.1164/rccm.201003-0472OC.

Hendriks, S. (2011). Illness experience, self-perceived support and need for help in patients with chronic obstructive pulmonary disease. Unpublished Master’s Thesis. University of Groningen, Groningen.



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Houben-Wilke, S., Augustin, I. M., Vercoulen, J. H., van Ranst, D., bij de Vaate, E., Wempe, J. B., Franssen, F. M. E. (2018). COPD stands for complex obstructive pulmonary disease doi:10.1183/16000617.0027-2018.

Jones, P. W. (2009). Health status and the spiral of decline. Copd, 6(1), 59-63. doi:10.1080/15412550802587943.Kunik, M. E., Roundy, K., Veazey, C., Souchek, J., Richardson, P., Wray, N. P., & Stanley, M. A. (2005). Surprisingly

high prevalence of anxiety and depression in chronic breathing disorders. Chest, 127(4), 1205-1211. doi:10.1378/chest.127.4.1205

Maurer, J., Rebbapragada, V., Borson, S., Goldstein, R., Kunik, M. E., Yohannes, A. M. ACCP Workshop Panel on Anxiety and Depression in COPD. (2008). Anxiety and depression in COPD: Current understanding, unanswered questions, and research needs. Chest, 134(4 Suppl), 43S-56S. doi:10.1378/chest.08-0342.

Mayer, N. (2011). COPD: A breathtaking experience, interviews with COPD-patients about their illness experience and need for psychosocial help. Unpublished Master’s Thesis. University of Groningen, Groningen.

Obradovic, L. M., Pesut, D. P., Maric, D., Maskovic, J., Maric, N. P., & Milikic, M. M. (2012). Symptoms of anxiety and depression in patients with chronic obstructive pulmonary disease. Pneumologia (Bucharest, Romania), 61(2), 92-96.

Patel, A. R., & Hurst, J. R. (2011). Extrapulmonary comorbidities in chronic obstructive pulmonary disease: State of the art. Expert Review of Respiratory Medicine, 5(5), 647-662. doi:10.1586/ers.11.62.

Rand, C. S., Nides, M., Cowles, M. K., Wise, R. A., & Connett, J. (1995). Long-term metered-dose inhaler adherence in a clinical trial. The lung health study research group. American Journal of Respiratory and Critical Care Medicine, 152(2), 580-588. doi:10.1164/ajrccm.152.2.7633711.

Rose, C., Wallace, L., Dickson, R., Ayres, J., Lehman, R., Searle, Y., & Burge, P. S. (2002). The most effective psychologically-based treatments to reduce anxiety and panic in patients with chronic obstructive pulmonary disease (COPD): A systematic review. Patient Education and Counseling, 47(4), 311-318. doi:10.1016/S0738-3991(02)00004-6

Schnell, K., Weiss, C. O., Lee, T., Krishnan, J. A., Leff, B., Wolff, J. L., & Boyd, C. (2012). The prevalence of clinically-relevant comorbid conditions in patients with physician-diagnosed COPD: A cross-sectional study using data from NHANES 1999-2008. BMC Pulmonary Medicine, 12, 26-2466-12-26. doi:10.1186/1471-2466-12-26.

Snoeck-Stroband, J., Schermer, T., van Schayck, C., Muris, J., van der Molen, T., Chavannes, N., Geijer, R. (2015). NHG-standaard COPD (derde herziening). Huisarts En Wetenschap, 58(4), 198-211.

World Health Organization (2017). Chronic obstructive pulmonary disease fact sheet. Retrieved from http://www.who.int/news-room/fact-sheets/detail/chronic-obstructive-pulmonary- disease-(copd).

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Chapter 2

Gemma A. Maters Jacob N. de Voogd

Robbert Sanderman Johan B. Wempe

COPD: Journal of Chronic Obstructive Pulmonary Disease, 2014, 11:4, 468-474. DOI: 10.3109/15412555.2014.898026

Predictors of all-cause mortality in patients with stable COPD: medical comorbid

conditions or high depressive symptoms


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AbstractComorbid conditions are frequently found in patients with COPD. We evaluate the association of comorbidities with mortality, in stable COPD. 224 patients, mean age 61.2 (±10.00), 48.2% female, mean FEV1 1.1 (±0.5) liters, median follow-up time 4.2 years, participated. Medical comorbidities were scored according to the Charlson Comorbidity Index (CCI). Depressive symptoms were assessed with the Hospital Anxiety and Depression Scale (HADS) and Symptom Checklist-90 (SCL-90). The Cox proportional hazard model was used for survival analyses. In our sample, 70% of all patients have a comorbid medical condition or high depressive symptoms. During follow-up 51% of all patients died, and those with heart failure have the highest mortality rate (75%). Age, fat-free mass and exercise capacity were predictive factors, contrary to CCI-scores and high depressive symptoms. An unadjusted association between heart failure and survival was found. Although the presence of comorbidities, using the CCI-score, is not related to survival, heart failure seems to have a detrimental effect on survival. Higher age and lower exercise capacity or fat-free mass predict mortality.

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IntroductionMedical and psychological comorbid conditions are frequently found in patients with Chronic Obstructive Pulmonary Disease (COPD) (Chatila, Thomashow, Minai, Criner, & Make, 2008; Patel & Hurst, 2011). Recently, Schnell et al. (Schnell et al., 2012) reported a prevalence rate of 96.4% and Anecchino et al. (Anecchino et al., 2007) found 68.4% of their cohort received medication for cardiovascular diseases, diabetes or depression. An association between medical comorbidities and mortality was demonstrated (Almagro et al., 2012), but not all investigators found an independent association (Groenewegen, Schols, & Wouters, 2003). However, many studies were performed in hospitalized patients (Almagro et al., 2002; Almagro et al., 2012; Antonelli Incalzi et al., 1997; Groenewegen et al., 2003; Holguin, Folch, Redd, & Mannino, 2005; Patil, Krishnan, Lechtzin, & Diette, 2003) and to the lesser extent in patients with stable COPD (Casanova et al., 2005; Marti, Munoz, Rios, Morell, & Ferrer, 2006; Soler-Cataluna et al., 2005). The aim of the present paper is to investigate the association between comorbidities and survival in stable COPD.

MethodsParticipantsPatients were recruited from January 2004 through December 2007, before starting pulmonary rehabilitation at the Center for Rehabilitation of the University Medical Center Groningen (UMCG), the Netherlands. All patients were diagnosed with COPD according to GOLD guidelines and 242 consecutive patients participated. COPD had to be stable for at least six weeks, patients had to be able to fill out questionnaires, perform cycle ergometry and spirometry. Also, medical history had to be available. Eighteen patients were excluded: one patient refused to fill out questionnaires, fourteen patients did not have fully available medical records, and three patients could not perform cycle ergometry due to their bodyweight (≥150 kilograms). Data of 224 patients were analyzed. All measurements took place as part of usual care, and each patient approved usage of his or her data. Therefore, no formal medical ethical approval was necessary due to local regulations.

Demographic variablesAge, sex, height, weight, marital status (‘living with a partner’ or ‘living without a partner’) and smoking status (‘never smoked or ex-smoker ≥ 1 year’ or ‘current smoker or ex-smoker < 1 year’) were derived from medical records.

Physiological parametersSpirometry (Masterlab, Viasys Healthcare) was performed to obtain FEV1 and Forced Vital Capacity (FVC). Total Lung Capacity (TLC) and Residual Volume (RV) were obtained using body plethysmography. Levels of arterial oxygen (PaO2), carbon dioxide tension (PaCO2) and lactate at rest were determined prior to cycle ergometry (OxyconPro, Viasys Healthcare). The Fat-Free Mass Index (FFMI) was determined by bioelectrical impedance analysis (Bodystat 1500).

predictors of all-cause mortality in patients with stable COPD


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Exercise capacityThe Incremental Shuttle Walk Test (ISWT: Singh, Morgan, Scott, Walters, & Hardman, 1992) was used to assess walking capacity. A symptom limited cycle ergometry was performed using a 1-minute incremental schedule at 5 or 10 watts (Varray & Prefaut, 1995). Maximal workload sustained for at least 30 s (Wpeak), and maximal oxygen uptake (VO2 peak) were measured.

Vital statusThe primary endpoint was all-cause mortality. Although cause of death was mentioned in death certificates, it was considered not accurate enough. Survival status was obtained from municipal registrations on June 8th 2012.

ComorbidityPatients’ comorbidities were obtained from medical histories, using prior diagnoses and current medication. In addition, hospital records and data from the primary care physician were obtained. With respect to medications: if patients used cardiovascular medications such as b-blockers or ACE-I, it was investigated for which indication it had been prescribed, e.g. CHF or systemic hypertension. Heart disease was defined to be present in case of documented STEMI or non-STEMI myocardial infarction, cardiological interventions and evidence for heart failure by echocardiography or scintigraphy. The presence of renal failure was looked for in medical records and by calculation of the eGFR, using serum creatinine, which was present in 178/224 patients and, classified as normal (eGFR>90 ml/min.1.73m2) renal function or mild (eGFR 60-89 ml/mion.1.73 m2) or moderate (eGFR 30-59 ml/min.1.73 m2) renal function failure. The Charlson Comorbidity Index (CCI) (Charlson, Pompei, Ales, & MacKenzie, 1987) was used to classify comorbidities and assign a weighted score. No score was attributed to COPD.Depressive symptoms were assessed with Dutch translations of the Hospital Anxiety and Depression Scale, depression subscale (HADS-D) (Van Hemert & Ormel, 1993; Zigmond & Snaith, 1983) and the 16-item depression subscale of the Symptom Checklist-90 (SCL-90) (Arrindell & Ettema, 2003; Derogatis, 1977). We used the conventional HADS-Depression cut- off (≥8) to indicate high depressive symptoms. For the SCL-90 no cut-off is available (Wagena, Arrindell, Wouters, & van Schayck, 2005).

Statistical analysesFor all analyses SPSS 18.0.3 for Windows (SPSS inc, Chicago, Illinois) was used. Patient characteristics were calculated in terms of means, standard deviations, medians or percentages. Comparison of non-survivors to survivors was carried out with independent samples t-tests. Presence of medical comorbidities (CCI-score of 0 versus ≥1) and high depressive symptoms (HADS-D≥8) were included in regression analyses. All variables significant at p<.05 on a bivariate level were included in a multivariate analysis, adjusting for confounders (Cox proportional hazard model). Results were expressed in hazard ratios (HR) and 95% Confidence Intervals (CI).

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ResultsPatient characteristicsCharacteristics of all patients (108 women, 116 men) are presented in Table 2.1. Of the 224 participants, 114 (51%) had died at the end of the observation period. The mortality rate was highest in patients with comorbid CHF. The overall median follow-up time is 4.2 years, ranging from 14 days to 7.6 years. The cumulative mortality rate is as follows; one year 8%, two years 16%, three years 25%, four years 33%, five years 39%, six years 46% and seven years 49%. Survivors are significantly younger than non-survivors, have higher FEV1 and FEV1%predicted, less hyperinflation, and a better exercise capacity (Wpeak, VO2peak and ISWT%predicted). Medical comorbidities are present in 56% of all patients. The most prevalent comorbidity is moderate or severe renal disease, followed by diabetes mellitus without organ damage (DM), congestive heart failure (CHF) and myocardial infarction (AMI, Table 2.2). Comorbidity scores are significantly higher in non-survivors. High depressive symptoms are present in 28% of all patients.

Predictors of mortality in all patients with stable COPDOn a bivariate level, CCI-scores or high depressive symptoms are not related with mortality (Table 2.3). Lower FEV1, lower PaO2, higher RV%TLC, higher FFMI, lower Wpeak, lower VO2peak and a lower ISWT%predicted are significantly related to mortality.



26

Variable N All patients Survivors All-cause mortality p value*

Female Sex (%) 224 48.2 54.5 42.1 ns

Age (y) 224 61.2 (±10.0) 57.7 (±8.9) 65.2 (±9.8) .000

Partner yes (%) 224 69.6 69.1 70.2 .011

Smoking yes (%) 224 36.6 40.0 33.3 ns

Median f.u. time (y) 224 4.2 4.7 3.1

FEV1 (l) 224 1.1 (±0.5) 1.3 (±0.6) 1.0 (±0.4) .001

FEV1 (%pred) 224 41.0 (±15.6) 43.2 (±16.3) 37.8 (±14.1) .012

GOLD stages (%) II/III/IV 224 27.7/44.2/28.1 35.5/38.2/26.4 20.2/50.0/29.8

RV%TLC 222 57.1 (±11.1) 54.7 (±12) 59.4 (±9.8) .001

BMI (kg/m²) 224 26.2 (±6.6) 26.5 (±7.0) 25.8 (±6.3) ns

FFMI (kg/m²) 212 18.8 (±4.5) 19.9 (±4.9) 17.8 (±3.9) .001

Wpeak (W) 217 45.6 (±31.2) 57.3 (±34.9) 34.6 (±22.3) .000

PaO2(kPa) 213 9.3 (±1.4) 9.4 (±1.4) 9.1 (±1.4) ns

PaCO2 (kPa) 214 5.4 (±1.3) 5.2 (±0.7) 5.6 (±1.7) ns

Lactate (mmol/l) 208 1.7 (±1.0) 1.5 (±0.86) 1.8 (±1.1) ns

VO2peak (ml/min) 217 869 (±374) 981 (±437) 760 (±259) .000

ISWT (%predicted) 222 213 (±151) 267 (±160) 162 (±122) .000

Depressive symptoms HADS 203 6.1 (±4.1) 6.5 (±4.2) 5.8 (±4.0) ns

Depressive symptoms SCL-90 224 28.7 (±10.4) 29.2 (±11.0) 28.2 (±9.9) ns

Charlson Comorbidity Index 224 0.6 (±0.9) 0.5 (±0.8) 0.8 (±1.0) .011

Table 2.1 Characteristics of the total sample of patients with stable COPD

Definition of abbreviations: FEV1= forced expiratory volume in 1 second; RV= residual volume; TLC=total lung capacity; BMI=body mass index; FFMI=fat-free mass index; Wpeak= maximal workload sustained for at least 30 s during symptom limited cycle ergometry; PaO2= arterial oxygen tension; PaCO2= arterial carbon dioxide tension; VO2peak= maximal oxygen uptake during symptom limited cycle ergometry; ISWT=incremental shuttle walk test.* Independent Samples Test.

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Comorbidity N (%)* All patients (N=224)

Survivors (N=110)

All Cause Mortality (N=114)

DM without organ damage 30 (13.4) 12 (10.9) 18 (15.8)

Congestive heart failure 28 (12.5) 7 (6.4) 21 (18.4)

Myocardial infarction 21 (9.4) 10 (9.1) 11 (9.6)

Any tumor 18 (8.0) 7 (6.4) 11 (9.6)

Cerebrovascular disease 13 (5.8) 5 (4.5) 8 (7.0)

Peripheral vascular disease 7 (3.1) 2 (1.8) 5 (4.4)

Connective tissue disease 6 (2.7) 2 (1.8) 4 (3.5)

Mild liver disease 7 (3.1) 3 (2.7) 4 (3.5)

Peptic ulcer disease 3 (1.3) 2 (1.8) 1 (0.9)

Moderate or severe renal disease** 37 (20.7) 12 (10.9) 25 (21.9)

Table 2.2 Frequencies of comorbidities in the sample of patients with stable COPD, classified according to the Charlson Comorbidity Index (CCI)

* The comorbidities dementia, hemiplegia, diabetes with organ damage, lymphoma, leukemia, moderate or severe liver disease, metastatic solid tumor and AIDS were not present in this sample **N=178, for 46 patients no data on recent renal function were available



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Variable B Hazard ratio 95% CI B Hazard ratio 95% CI

Sex¹ 0.30 1.36 0.93-1.97

Age (y) 0.05 1.05 1.03-1.08**** 0.04 1.04 1.02-1.07****

Partner² 0.01 1.01 0.68-1.52

Smoking³ -0.17 0.84 0.57-1.25

FEV1 (l) -0.56 0.57 0.38-0.86*** -0.05 0.96 0.57-1.59

RV%TLC (%, n=216) 0.02 1.02 1.00-1.04**

BMI (kg/m²) -0.03 0.98 0.95-1.01

FFMI (kg/m², n=212) -0.06 0.92 0.89-0.99** -0.08 0.93 0.88-0.98***

Wpeak (W, n=217) -0.02 0.98 0.97-0.99****

PaO2 (kPa, n=213) -0.16 0.86 0.74-0.99**

PaCO2 (kPa, n=214) 0.08 1.08 0.99-1.20

Lactate (mmol/l, n=208) 0.12 1.11 0.95-1.29

VO2peak (ml/min, n=217) -0.00 0.99 0.998-0.999****

ISWT (%predicted, n=222) -0.00 1.00 0.994-0.998**** -0.03 0.997 0.995-0.999***

Depressive sympt. HADS (n=203) -0.02 0.98 0.93-1.03Depressive sympt. SCL-90 -0.01 0.99 0.97-1.01

Charlson Comorbidity Index4 0.28 1.32 0.91-1.92

Bivariate Multivariate*

Table 2.3 Predictors of mortality in all patients with stable COPD

Definition of abbreviations: FEV1= forced expiratory volume in 1 second; RV= residual volume; TLC=total lung capacity; BMI=body mass index; FFMI=fat-free mass index; Wpeak= maximal workload sustained for at least 30 s during symptom limited cycle ergometry; PaO2= arterial oxygen tension; PaCO2= arterial carbon dioxide tension; VO2peak= maximal oxygen uptake during symptom limited cycle ergometry; ISWT=incremental shuttle walk test.*Cox proportional hazard model backward stepwise (Wald) **p<0.05***p<0.01****p<0.0011 0=female, 1=male2 0=living without a partner, 1=living with a partner3 0=never smoked or ex-smoker for ≥1 year, 1= current smoker or ex-smoker <1 year 4 0=no comorbidity, 1=one or more comorbidities

Multivariate cox regression analyses further demonstrate ISWT%predicted (hazard ratio=0.997, 95% C.I. 0.995-0.999) is an independent predictor of increased mortality, adjusting for age, FEV1 and FFMI. Analyses with Wpeak or VO2peak, substituting ISWT%predicted, show Wpeak is associated with mortality (hazard ratio=0.98, 95% C.I. 0.97-0.99) but VO2peak (hazard ratio=0.999, 95% C.I. 0.998-1.000) is not.

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Adjusted for age, FEV1 and ISWT%predicted, FFMI (hazard ratio= 0.93, 95% C.I. 0.88- 0.98) is independently predictive of increased mortality, whereas BMI is not. An additional bivariate analysis with three subsamples (underweight; BMI<21, normal weight; BMI≥21 and <30, overweight; BMI>30), reveals no signifi cant result either. FEV1 does not predict survival independently (after adjusting for age, FFMI and ISWT%predicted). Additionally, RV%TLC (hazard ratio=0.99, 95% C.I. 0.97-1.01) and PaO2 (hazard ratio=0.92, 95% C.I. 0.80-1.06) are not associated with mortality when tested in separate multivariate analyses, substituting FEV1. Because of the high mortality rate in patients with comorbid CHF, an additional survival analysis performed with comorbid heart failure as a dichotomy (present or absent) in our total sample shows an association with increased mortality (p=.005, hazard ratio=1.97, 95% C.I. 1.23- 3.18). But, this association was no longer signifi cant after adjusting for age, ISWT and FFMI (p=.208, hazard ratio=1.39, 95% C.I. 0.83-2.32). A survival curve using Kaplan-Meier estimates was plotted for this subsample and a sample of patients without comorbid conditions, to graphically illustrate the high mortality rate (Figure 2.1).

Figure 2.1 Kaplan Meier survival plots for patients with stable COPD without medical comorbidities or high depressive symptoms and patients with stable COPD and congestive heart failure.

Legends Patients with COPD without medical comorbidities or high depressive symptoms (n=83) Patients with COPD and comorbid congestive heart failure (n=28)



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DiscussionIn our sample of patients with stable COPD, 56% is diagnosed with at least one comorbid medical condition, 28% has high depressive symptoms and 70% has either at least one medical comorbid condition or high depressive symptoms. Having a comorbid condition in itself (Charlson Comorbidity Index-score) is not related to long-term mortality. However, heart failure is, unadjusted, associated with survival and this particular sample has the most unfavorable survival prospects (75% died). Acknowledged survival predictors age, exercise capacity test ISWT, cycle ergometry derived Wpeak and fat-free mass do independently predict survival. For each year a patient gains, the estimated survival chance decreases with 4%. Further, a low score increases the risk of dying per year with 3% for the ISWT (%predicted), with 2% for Wpeak (per 5 W) and with 7% for fat-free mass (per 1 kg/m2). Our finding that the Charlson Comorbidity Index-scores did not predict mortality contradicts with the work of some (Casanova et al., 2005; Marti et al., 2006), but is in line with the results of others (Soler-Cataluna et al., 2005). One explanation for the absence of an association with mortality might lie in the possibly exponential relationship between CCI-scores and survival (Sin, Anthonisen, Soriano, & Agusti, 2006). But, our finding might as well indicate more pervasive problems with the CCI exist. Therefore the CCI should be handled carefully, especially in clinical samples. Alternative indices need to be developed (Divo et al., 2012; Patel & Hurst, 2011). The observed mortality (51%) is more or less similar to the mortality in two other cohorts we earlier investigated: n=121, age 61 y, follow-up 8,5 y, mortality 63% (7.5 %/y) (de Voogd, Wempe, Koeter et al., 2009) and n=122, age 61 y, follow-up 7 y, mortality 39% (5.6 %/y) (de Voogd, Wempe, Postema et al., 2009). The mortality in our cohorts is somewhat higher than in other ‘landmark’ cohorts: Moberg et al (Moberg et al., 2013): n=674, age 69 y, mean follow-up 5.5y , mortality 48.2%, (8.8%/y) , the medical group from the NETT (A randomized trial comparing lung-Volume–Reduction surgery with medical therapy for severe emphysema.2003): n=610, age 67 y, follow-up 6 y, mortality 50% (8,3 %/y) and Marin et al (Marin, Soriano, Carrizo, Boldova, & Celli, 2010): n=210, age 57 y, follow-up 9 y, mortality 24 % 2.7 %/y). Differences between the study groups with respect to age and phenotype (lung function, exacerbations) largely account for the differences in mortality between our groups and others. Our cohorts consisted of subjects specifically referred for rehabilitation, being severely ill, whilst other groups consisted of more or less stable patients. We found that 56% of all patients have at least one comorbid medical condition. This is higher than prevalence rates found in other survival studies in stable COPD-patients which used the CCI. One study found a percentage of 38% (Marti et al., 2006) and another report 43.8% of their sample has at least one comorbid condition, but they excluded patients with certain comorbidities (e.g. heart failure) (Soler-Cataluna et al., 2005). The percentages of the specific comorbidities in our study correspond to percentages in earlier studies (Patel & Hurst, 2011). We relied on a thorough retrospective analysis of medical records in our study. This is considered an accepted way to calculate CCI scores. Prevalence rates for studies that relied on analysis of medical records range from 7-23% for congestive heart failure (Noteboom et al., 2014; Sidney et al., 2005; Sin & Man, 2003; Soriano, Visick, Muellerova, Payvandi, & Hansell, 2005). In our study we found 12,5% of our sample of stable COPD patients to have a comorbid diagnosis of congestive

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heart failure. In COPD literature, we found two studies who relied on a prospective analysis of congestive heart failure (echocardiography) (Macchia et al., 2012; Rutten et al., 2005). Macchia et al. found 17% of their sample of stable COPD suffered from (diastolic or systolic) ventricular dysfunction. Rutten et al showed 20,5% of their sample of primary care patients with stable COPD suffered from comorbid heart failure. As far as we know, the study by Macchia et al is the only study that examined the mortality prognosis for COPD patients with or without CHF. It showed a nearly significant increase in mortality when left ventricular dysfunction was present (HR 2.3, p=0.053). Our study investigated whether comorbidity influences prognosis. We are of course aware that an analysis of medical records has limitations, compared to echocardiography, but as we found quite similar prevalences with previous studies, we are confident that the results of our study yields useful and valid information. The negative effect of heart failure on mortality in COPD was found in several studies using prior diagnosis of heart failure (Almagro et al., 2012; Slenter et al., 2012) or high levels of NT-proBNP (Hoiseth, Omland, Hagve, Brekke, & Soyseth, 2012; Medina et al., 2011). These studies were in hospitalized patients, and follow-up was up to one year. These and our findings point at awareness of adequate diagnosis and treatment of heart failure in COPD, not only in an acute situation, but also in a stable condition. In this study, the ISWT is as strongly associated to survival as cycle ergometry derived Wpeak and performs even better than VO2peak. Our finding that the ISWT independently predicts survival is in accordance with recent findings by others (Ringbaek et al., 2010; Williams et al., 2012). The ISWT is easy to perform, relatively cheap and might in certain cases be considered as an alternative to ergometry tests (Arnardottir, Emtner, Hedenstrom, Larsson, & Boman, 2006; Luxton, Alison, Wu, & Mackey, 2008). Fat-free mass predicts mortality in our study, whereas BMI does not. The predictive value of fat-free mass is in accordance with other studies in stable COPD outpatients (Vestbo et al., 2006; Waschki et al., 2011), or in patients following a rehabilitation program (Schols, Broekhuizen, Weling-Scheepers, & Wouters, 2005). In addition, a low fat-free mass was predictive of postoperative complications following Lung Volume Reduction Surgery (Nezu et al., 2001). BMI does not predict survival in our study, as in the study of Schols et al., perhaps partly due to overlap between low fat-free mass and low BMI. On the other hand, BMI and FFM are supposed to be of additional value to each other (Vestbo et al., 2006) and our and other results may suggest that in patients with worse COPD, e.g. those attending a rehabilitation program, the FFMI is a better predictor of mortality than the BMI. Contrary to earlier findings of our research group (de Voogd et al., 2009; de Voogd et al., 2009) depressive symptoms are not associated to survival. One of the issues in explaining this finding is homogeneity of measures over studies. Earlier, the Beck Depression Index and theBrief Assessment Schedule Depression Cards did not independently associate to survival (Waschki et al., 2011; Yohannes, Baldwin, & Connolly, 2005). The HADS was studied twice before and both studies generated an independent association with mortality (de Voogd et al., 2009; Ng et al., 2007). We are the first to study SCL-90 depression subscale scores as a predictor for mortality, which were not predictive.



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ConclusionsExercise capacity parameters, fat-free mass and age independently predict survival. The Charlson Comorbidity Index (CCI) is not a significant predictor in this group with stable COPD and we question the value of the CCI in relatively small samples. Patients with comorbid heart failure have the worst outcomes in terms of survival.

AcknowledgementsWe thank Eric van Sonderen, methodologist, for his assistance in the data analysis.

Declaration of interestAll authors have no conflicts of interest to disclose. The work was funded by the Lung Foundation Netherlands. The sponsor had no role in the study design, data collection, data analysis, writing and reviewing of the manuscript.

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Slenter, R. H., Sprooten, R. T., Kotz, D., Wesseling, G., Wouters, E. F., & Rohde, G. G. (2012). Predictors of 1-year mortality at hospital admission for acute exacerbations of chronic obstructive pulmonary disease. Respiration; International Review of Thoracic Diseases, doi:10.1159/000342036.

Soler-Cataluna, J. J., Sanchez-Sanchez, L., Martinez-Garcia, M. A., Sanchez, P. R., Salcedo, E., & Navarro, M. (2005). Mid-arm muscle area is a better predictor of mortality than body mass index in COPD. Chest, 128(4), 2108-2115. doi:10.1378/chest.128.4.2108

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Van Hemert, B., & Ormel, J. (1993). Nederlandse versie van de hospital anxiety and depression scale (HADS); vragenlijst en regels voor scoring - Dutch version of the hospital anxiety and depression scale (HADS); questionnaire and scoring instructions. Leiden /Groningen: Vakgroep psychiatrie /Vakgroep gezondheidswetenschappen.

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Vestbo, J., Prescott, E., Almdal, T., Dahl, M., Nordestgaard, B. G., Andersen, T., Lange, P. (2006). Body mass, fat-free body mass, and prognosis in patients with chronic obstructive pulmonary disease from a random population sample. American Journal of Respiratory and Critical Care Medicine, 173(1), 79-83. doi:10.1164/rccm.200505-969OC.

Wagena, E. J., Arrindell, W. A., Wouters, E. F., & van Schayck, C. P. (2005). Are patients with COPD psychologically distressed? The European Respiratory Journal, 26(2), 242-248. doi:10.1183/09031936.05.00010604.

Waschki, B., Kirsten, A., Holz, O., Muller, K. C., Meyer, T., Watz, H., & Magnussen, H. (2011). Physical activity is the strongest predictor of all-cause mortality in patients with COPD: A prospective cohort study. Chest, 140(2), 331-342. doi:10.1378/chest.10-2521.

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37

Discrepancies between patients’ and partners’ perceptions of unsupportive behavior in Chronic Obstructive Pulmonary Disease

Chapter 3

Evelien Snippe Gemma A. Maters

Johan B. Wempe Mariët Hagedoorn

Robbert Sanderman

Journal of Family Psychology, 2012 Jun;26(3):464-9. doi: 10.1037/a0028333


38

AbstractThe literature on chronic diseases indicates that partner support, as perceived by patients, contributes to well-being of patients in either a positive or a negative way. Previous studies indicated that patients’ and partners’ perceptions of unsupportive partner behavior are only moderately related. Our aim was (1) to investigate whether discrepancies between patients’ and partners’ perceptions of two types of unsupportive partner behavior - overprotection and protective buffering - were associated with the level of distress reported by patients with Chronic Obstructive Pulmonary Disease (COPD) and (2) to evaluate whether the direction of the differences between patients’ and partners’ perceptions was associated with distress (i.e., whether patient distress was associated with greater patient or greater partner reports of unsupportive partner behavior). A cross-sectional study was performed using the data of a sample of 68 COPD patients and their spouses. Distress was assessed using the Hopkins Symptom Checklist-25. Patients’ and partners’ perceptions of unsupportive partner behavior were assessed with a questionnaire measuring overprotection and protective buffering. Distress was independently associated with patients’ perceptions of protective buffering and discrepancies in spouses’ perceptions of overprotection. Regarding the direction of the discrepancy, we found that greater partner reports of overprotection as compared to patient reports were related to more distress in COPD patients. Our study showed that patients’ distress was associated not only with patients’ perceptions but also with discrepancies between patients’ and partners’ perceptions of unsupportive partner behavior.

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IntroductionChronic Obstructive Pulmonary Disease (COPD) is a chronic disease characterized by a progressive limitation of airflow. COPD patients generally experience dyspnea (breathlessness) and cough, resulting in restrictions in activities of daily life. Research has indicated that having COPD may be accompanied by considerable levels of anxiety and depression (Brenes, 2003; Mikkelsen, Middelboe, Pisinger, & Stage, 2004). Taking into account the difficulties that the disease brings with it, COPD patients may have a high need for support from their spouses. Living together with a spouse has been associated with better adherence to medication regimens (Rand, Nides, Cowles, Wise, & Connett, 1995) and rehabilitation programs (Fischer et al., 2009). There are a few studies which have examined the role of partner support or social support in general in relieving distress of COPD patients (e.g. Grodner, Prewitt, Jaworski, & Myers, 1996; Marino, Sirey, Raue, & Alexopoulos, 2008; McCathie, Spence, & Tate, 2002). These studies have shown that patients’ evaluations of their social support, including the support of their partners, are associated with their well-being (Grodner et al., 1996; Marino et al., 2008; McCathie et al., 2002). However, the way partners provide support may not always be positively associated with patients’ well-being, as has been shown in research on patients with other diseases (Joekes, van Elderen, & Schreurs, 2007; Thompson & Sobolew-Shubin, 1993). Coyne and Smith (1991) have described two types of spousal supportive behavior that may be perceived as unhelpful by the recipient: protective buffering and overprotection. Protective buffering stands for concealing worries, hiding concerns, and avoiding negative experiences. Overprotection means that the partner lacks confidence in patients’ capabilities, resulting in providing unnecessary help and attempts to restrict the patients’ activities. Former studies have shown that patients’ perceptions of overprotection and protective buffering are positively related to psychological distress of patients with cancer, post-myocardial infarction, asthma and diabetes (De Ridder, Schreurs, & Kuijer, 2005; Joekes et al., 2007; Kuijer et al., 2000; Thompson & Sobolew-Shubin, 1993). Previous studies have pointed out that it is important to study both patients’ and partners’ perceptions of spousal supportive behavior (e.g. Pence, Cano, Thorn, & Ward, 2006; Schokker et al., 2011). How patients perceive partners’ supportive and unsupportive behavior seems to be only moderately related to partners’ perceptions, indicating that couples do not always agree about the healthy partner’s behavior (Hagedoorn et al., 2000; Kuijer et al., 2000; Schokker et al., 2010). Dissimilarities between spouses’ perceptions of unsupportive partner behavior could be due to different perceptions of wanted and needed support. For example, spousal support that does not match the needs of patients was found to be associated with higher levels of patient distress after hematopoietic stem cell transplantation (Rini et al., 2011). Yet, the association between discrepancies in spouses’ perceptions of partner support and distress of patients has received little study. Pence and colleagues (2006) showed that patient-partner dissimilarities in perceived spousal responses to pain were associated with depression in patients with chronic musculoskeletal pain. In contrast, the work of Norton and Manne (2007) showed that broad disagreements between cancer patients’ and partners’ perceptions of supportive and unsupportive behavior were not associated with psychological distress. This finding could be due to the fact that few of these couples differed in their perceptions of supportive behavior, because the authors used stringent

Discrepancies between patients’ and partners’ perceptions


40

criteria for disagreement. Because discrepancies in perceptions may be relatively small, less stringent criteria were used for measuring discrepancies in the current study. We examined Coyne and Smith’s conceptualization of unsupportive behavior from the perspective of COPD patients and their partners to investigate the association between discrepancies in spouses’ perceptions and patients’ distress. The direction of the discrepancy has been put forward as a factor that is important to take into account when studying concordance of spouses’ perceptions (Pence et al., 2006). Evaluating the direction of the discrepancy may result in a better understanding of the relationship between dissimilarities in spouses’ perceptions and patients’ distress. For example, it has been suggested that distressed patients are inclined to negatively evaluate their partners’ behavior because of their negative state of mind (Story & Bradbury, 2004). As a consequence, distressed patients might evaluate their partners’ behavior as more unsupportive than their partners. In the present study, we investigated the association between the direction of the discrepancies (i.e., more reported unsupportive behavior by either patients or partners) and COPD patients’ distress. Our aim was to test three hypotheses. First, we hypothesized that patients’ perceptions of overprotection and protective buffering would be positively related to distress of the COPD patients. Second, we hypothesized that absolute discrepancies between patients’ and partners’ perceptions of overprotection and protective buffering would be positively associated with distress in the patients, in addition to patients’ perceptions. Regarding the direction of the discrepancies, we hypothesized that patients’ greater reporting of overprotection and protective buffering as compared to their partners would be associated with more distress in COPD patients.

MethodParticipantsThe participants were 68 COPD patients, aged between 40 and 80, and their partners, recruited at the outpatient clinic for pulmonary diseases of the University Medical Center Groningen (UMCG) and at the Rehabilitation Center of the UMCG, at the start of the rehabilitation program. Both patients and partners had to be capable of filling out questionnaires. Four stages of COPD can be distinguished according to the Global initiative for Chronic Obstructive Lung Disease (GOLD, (2011). These stages are based on the ratio between Forced Expiratory Volume in 1 second (FEV1) and the average FEV1 of healthy people with the same age, sex, and height: FEV1≥ 80 % (GOLD I), FEV1 between 50% and 80% (GOLD II), FEV1 between 30% and 50% (GOLD III) or FEV1< 30% (GOLD IV), all in the presence of a FEV1/FVC ratio < 70%. A high GOLD stage is associated with more pulmonary symptoms. Only patients diagnosed with GOLD stage II-IV for at least half a year were included in the study, because pulmonary symptoms may go unnoticed in GOLD stage I. The mean age of participating patients was 64 (SD = 9.5) and the mean age of partners was 62 (SD = 9.7). Almost half of the patients (47%) and partners (46%) had a low level of education (primary school and/or vocational training for 12-16 year-olds). Most of the couples were married (88%) and had been in a relationship for 34.2 years on average (SD = 14.2). Slightly more male patients participated (57%) and more patients were included at the outpatient clinic (56%). GOLD stages II-IV were equally represented among patients. Almost one third of the patients used an antidepressant or a benzodiazepine (26%).

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ProceduresHeterosexual couples that were recruited at the outpatient clinic were instructed to fill out the questionnaires separately at home. Couples that were recruited at the rehabilitation center filled out the questionnaire at the center but in separate rooms. Patients provided written informed consent for collecting data from their medical records. A total of 102 couples were eligible for the study. Fifteen couples refused to participate; nineteen couples provided informed consent but failed to return the questionnaires. The majority of the non-respondents explicitly stated that they felt too ill to complete the questionnaire. The other 68 couples completed the questionnaires (response rate of 67%).

MeasuresOverprotection and protective buffering by partners. Patients’ and partners’ perceptions of overprotection and protective buffering by partners were measured with a questionnaire developed by Buunk and colleagues (Buunk, Berkhuysen, Sanderman, & Nieuwland, 1996), based on the work of Coyne and Smith (1991). The questionnaire was similar for patients and partners, except for minor differences in wording. Patients rated how often their partners engaged in overprotection and protective buffering (patients’ perceptions) and partners rated their own overprotective and protective buffering behavior (partners’ perceptions). Overprotection was measured with six items. An example of an item that patients were asked to rate is: “My partner continuously keeps an eye on me.” The protective buffering scale consists of eight statements. An example of an item that partners were asked to rate is: “I try to hide my worries about my partner.” Items were rated on a 5-point Likert scale ranging from “never” (1) to “very often” (5). The internal consistency (Cronbach’s alpha) of the protective buffering scale was 0.67 for patients’ perceptions and 0.63 for partners’ perceptions. The internal consistency of the overprotection scale was 0.80 for patients’ perceptions and 0.55 for partners’ perceptions. Removing the item with the lowest item-total correlation did not improve the internal reliability of the overprotection scale measuring partners’ perceptions. We calculated absolute discrepancies between patients’ and partners’ perceptions of both protective buffering and overprotection by taking the mean absolute difference between patients’ and partners’ perceptions per item (the discrepancies measure). This way, we were able to assess subtle discrepancies in spouses’ perceptions of unsupportive partner behavior. We measured the direction of the discrepancies by taking the mean of the differences between patients’ and partners’ perceptions per item (the direction measure). Similar to the scoring used by Benyamini et al. (2007), we subtracted partners’ ratings of overprotection and protective buffering from patients’ ratings, so that positive scores indicate that patients report more unsupportive partner behavior and negative scores indicate that partners report more unsupportive behavior. Psychological distress. Psychological distress of patients was measured with a Dutch translation of the Hopkins Symptom Checklist-25 (HSCL-25) (Derogatis, Lipman, Rickels, Uhlenhuth, & Covi, 1974). Because we were unable to get into contact with the author and inquire about the quality of the translation, we asked a team of professional translators to inspect the translation. They suggested minor revisions in the wording of two items. The questionnaire consists of 25 items measuring symptoms of anxiety and depression. Patients had to rate symptoms in terms of feeling



42

blue, trembling, and crying easily. Patients were asked to rate symptoms experienced during the past week as ranging from “never” (1) to “always” (4). A higher score implied more psychological distress (range: 25-100). The internal consistency was sufficient (Cronbach’s alpha = 0.93).

Statistical Testing of the HypothesesTo test the hypotheses, the correlations between the variables under study were inspected and three multiple regression analyses were performed. First, the associations between gender, age, education, occupational status, marital status, disease stage, time since diagnosis, use of antidepressants, and the variables under study were examined. Only patients’ level of education and gender were associated with patients’ distress and one of the variables under study. Level of education and gender were therefore included as covariates in a first step in all the analyses. Patients’ perceptions were entered in a second step in all analyses in order to control for their shared variance with patient-partner discrepancies. The discrepancies measure was entered in a third step in the analysis on the absolute discrepancies in spouses’ perceptions. The direction measure was entered instead of the discrepancies measure in the analysis on the direction of the discrepancies. All analyses were performed using data from 68 couples.

ResultsPatients’ perceptions of overprotection and protective buffering.The mean scores of overprotection and protective buffering, presented in Table 3.1, were within the range of means found in other studies (Kuijer et al., 2000). Table 3.1 shows that patients’ perceptions of both overprotection and protective buffering were bivariately positively associated with distress of patients. When both types of unsupportive behavior were jointly regressed on distress, only protective buffering was associated significantly with patients’ distress (see Table 3.2). Together, patients’ perceptions of overprotection and protective buffering explained 24% of the variance in distress of COPD patients.

Discrepancies between patients’ and partners’ perceptions. We examined whether absolute discrepancies in spouses’ perceptions of unsupportive partner behavior were associated with patients’ distress. Discrepancies in perceived overprotection were bivariately related to distress (Table 3.1), also when adjusted for patients’ perceptions (Table 3.2). Discrepancies in perceived protective buffering were not associated with distress of patients, neither bivariately nor after adjustment for patients’ perceptions. Overall, absolute patient-partner discrepancies in both types of unsupportive partner behavior added 6% explained variance in distress of COPD patients, in addition to patients’ perceptions.

Direction of patient-partner discrepancies. Finally, we explored the direction of the discrepancies between patients’ and partners’ perceptions of overprotection and protective buffering. Partners’ greater reporting of overprotection as compared to patients’ reporting was associated significantly with patients’ distress, when controlling for patients’ perceptions (Table 3.2). The direction measure of patient-partner discrepancies in perceived unsupportive partner behavior explained 13% of the variance in distress of COPD patients.

Chapter 3


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Variable Distress OP

patients

PB

patients

OP

partners

PB

partners Mean SD

1. Distress patients 44.26 11.37

2. OP patients .44** 2.13 0.80

3. PB patients .60** .45** 2.41 0.58

4. OP partners .46** .30* .16 2.07 0.56

5. PB partners .26* .04 .29* .44** 2.41 0.56

6. OP discrepancies .52** .55** .47** .23 .10 0.90 0.56

7. PB discrepancies .19 .25* .31* .28* .20 0.89 0.40

8. OP direction .11 .76** .33** -.39** -.26* 0.06 0.83

9. PB direction .30* .34** .62** -.23 -.57** 0.00 0.68

Table 3.1 Correlations among the variables under study

Note. OP = overprotection; PB = protective buffering. Discrepancies = absolute discrepancies between spouses’ perceptions. Direction = the mean discrepancy between spouses’ perceptions; positive scores indicate that patients report more OP or PB and negative scores indicate that partners report more OP or PB. N = 68 couples.

* p < 0.05. ** p < 0.01.

It might be that partners’ greater reporting of overprotection explains the association between absolute patient-partner discrepancies in perceived overprotection and distress. Therefore, we carried out an additional regression analysis in which distress was regressed on both absolute discrepancies in perceived overprotection and the direction of the discrepancy measure of overprotection (adjusted for patients’ perceptions and the covariates). This analysis showed that distress was associated with both the absolute discrepancies in perceived overprotection (B = 0.37, t = 3.51, p = < 0.01) and greater partner reports of overprotection (B = -0.57, t = -4.57, p = < 0.00).



44

Pa

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0

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0

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0.0

3

2.4

9

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3

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0.82

13.1

8

0.2

9

0.7

0

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3

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0

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8

3. P

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38

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2

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9

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-

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nsup

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s Pre

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ove

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. Dire

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tions

; pos

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and

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P or

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N =

68

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* p <

0.0

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p <

0.


45

DiscussionThe aim of the study was to examine the associations between discrepancies in spouses’ perceptions of unsupportive partner behavior and distress of COPD patients. Patient-partner discrepancies in perceived overprotection were associated with more distress in COPD patients, over and above what patients’ perceptions explained. In addition, we investigated the role played by the direction of the difference. We hypothesized that patients’ greater reporting of unsupportive partner behavior would be positively associated with patients’ distress. Contrary to our hypothesis, we found that greater partner reports of overprotection as compared to patient reports were associated with more distress. The findings on COPD patients’ perceptions of unsupportive partner behavior are similar to findings of other studies (Hinnen, Ranchor, Baas, Sanderman, & Hagedoorn, 2009; Joekes et al., 2007; Manne et al., 2007). Previous studies also found that bivariately both protective buffering and overprotection were related to distress; examined together, only one of the support types showed an independent association (Kuijer et al., 2000). When taking both types of support into account simultaneously, only protective buffering was associated significantly with distress in the present study. This suggests that COPD patients report higher levels of distress especially when they perceive that their partner hides concerns and acts as if nothing is going on. However, another explanation might be that distressed patients elicit more protective buffering behavior from their partners. We are the first to show that discrepancies between patients’ and partners’ perceptions of overprotection are associated with more distress of patients. This association was not explained by the direction of the discrepancy; patient-partner discrepancies in perceived overprotection were associated with patients‘ distress, over and above the direction of the difference. It might be that spouses have dissimilar perceptions of unsupportive partner behavior due to a lack of communication about their needs and ways of coping with the illness. Discrepancies in spouses’ perceptions may also result from distress of either patients or partners, since the burden of caregiving in COPD may lead to distress in partners as well (Pinto, Holanda, Medeiros, Mota, & Pereira, 2007). Previous research has shown that depressed individuals perceive different behaviors as being helpful than do never-depressed individuals (Vollmann et al., 2010). The present study did not support the hypothesis that distressed patients report more overprotection and protective buffering in comparison to partners’ self-report of overprotection. Instead, we found that distress is associated with partners’ greater reporting of overprotection as compared to patients. Partners might distrust the patient’s capability of coping with the disease and might constantly keep an eye on the patient because of patients’ distress. Patients might not notice their spouses’ overprotective behavior, which is reflected in lower levels of overprotection reported by patients. However, this finding needs to be replicated to establish its robustness. The present study has several strengths such as data from both patients and spouses, and a high response rate (67%). Yet, the study has some limitations as well. A first limitation is the cross-sectional nature of the study. We cannot rule out that patients’ distress leads to more discrepancies in spouses’ perceptions of unsupportive behavior. Multicollinearity between protective buffering and overprotection may be a limitation of the present study as well. Conceivably, protective buffering and overprotection reflect different aspects of unsupportive behavior associated with



46

distress in patients. The way we measured discrepancies may be limited as subtle discrepancies may reflect measurement error or self-other reporting bias. Another limitation is the low reliability of the scale that measured overprotection as perceived by partners. The overprotection scale measures a behavioral aspect (constantly keeping an eye on the ill spouse) and a cognitive aspect (distrust in the patient’s capability of coping with the disease) of overprotection. These two aspects of overprotection do not seem to be strongly related in the current sample of partners, while they are in fact related in the patients. The relationship between these two aspects of overprotection might warrant future research. Investigating unsupportive partner behavior from both the provider’s and recipient’s perspective is valuable, since reports of patients and discrepancies between spouses are independently associated with distress of COPD patients. Couples could thus be encouraged to communicate more with each other about their ways of giving support. Exchanging perceptions and expectations regarding supportive behavior may in turn enhance the well-being of both patients and partners (Kuijer, Buunk, De Jong, Ybema, & Sanderman, 2004). Future studies may shed more light on the mechanisms through which dissimilarities in spouses’ perceptions of unsupportive behavior might negatively affect patients’ well-being, for example by looking into the role of wanted and unwanted support as well as spousal communication.

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Kuijer, R. G., Buunk, B. P., De Jong, G. M., Ybema, J. F., & Sanderman, R. (2004). Effects of a brief intervention program for patients with cancer and their partners on feelings of inequity, relationship quality and psychological distress. Psycho-Oncology, 13(5), 321-334. doi:10.1002/pon.749.

Manne, S. L., Norton, T. R., Ostroff, J. S., Winkel, G., Fox, K., & Grana, G. (2007). Protective buffering and psychological distress among couples coping with breast cancer: The moderating role of relationship satisfaction. Journal of Family Psychology, 21(3), 380-388. doi:10.1037/0893-3200.21.3.380.

Marino, P., Sirey, J. A., Raue, P. J., & Alexopoulos, G. S. (2008). Impact of social support and self-efficacy on functioning in depressed older adults with chronic obstructive pulmonary disease. International Journal of Chronic Obstructive Pulmonary Disease, 3(4), 713-718.



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McCathie, H. C., Spence, S. H., & Tate, R. L. (2002). Adjustment to chronic obstructive pulmonary disease: The importance of psychological factors. The European Respiratory Journal, 19(1), 47-53. doi:10.1183/09031936.02.00240702.

Mikkelsen, R. L., Middelboe, T., Pisinger, C., & Stage, K. B. (2004). Anxiety and depression in patients with chronic obstructive pulmonary disease (COPD). A review. Nordic Journal of Psychiatry, 58(1), 65-70. doi:10.1080/08039480310000824.

Norton, T. R., & Manne, S. L. (2007). Support concordance among couples coping with cancer: Relationship, individual, and situational factors. Journal of Social and Personal Relationships, 24(5), 675-692. doi:10.1177/0265407507081454.

Pence, L., Cano, A., Thorn, B., & Ward, L. C. (2006). Perceived spouse responses to pain: The level of agreement in couple dyads and the role of catastrophizing, marital satisfaction, and depression. Journal of Behavioral Medicine, 29(6), 511-522. doi:10.1007/s10865-006-9073- 4.

Pinto, R. A., Holanda, M. A., Medeiros, M. M., Mota, R. M., & Pereira, E. D. (2007). Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease. Respiratory Medicine, 101(11), 2402-2408. doi:10.1016/j.rmed.2007.06.001.

Rand, C. S., Nides, M., Cowles, M. K., Wise, R. A., & Connett, J. (1995). Long-term metered-dose inhaler adherence in a clinical trial. the lung health study research group. American Journal of Respiratory and Critical Care Medicine, 152(2), 580-588.

Rini, C., Redd, W. H., Austin, J., Mosher, C. E., Meschian, Y. M., Isola, L., DuHamel, K. N. (2011). Effectiveness of partner social support predicts enduring psychological distress after hematopoietic stem cell transplantation. Journal of Consulting and Clinical Psychology, 79(1), 64-74. doi:10.1037/a0022199.

Schokker, M. C., Links, T. P., Bouma, J., Keers, J. C., Sanderman, R., Wolffenbuttel, B. H. R., & Hagedoorn, M. (2011). The role of overprotection by the partner in coping with diabetes: A moderated mediation model. Psychology & Health, 26(1), 95-111. doi:10.1080/08870440903342325.

Schokker, M. C., Stuive, I., Bouma, J., Keers, J. C., Links, T. P., Wolffenbuttel, B. H. R., Hagedoorn, M. (2010). Support behavior and relationship satisfaction in couples dealing with diabetes: Main and moderating effects. Journal of Family Psychology, 24(5), 578-586. doi:10.1037/a0021009.

Story, L. B., & Bradbury, T. N. (2004). Understanding marriage and stress: Essential questions and challenges. Clinical Psychology Review, 23(8), 1139-1162. doi:10.1016/j.cpr.2003.10.002.

Thompson, S. C., & Sobolew-Shubin, A. (1993). Overprotective relationships: A nonsupportive side of social networks. Basic and Applied Social Psychology, 14(3), 363-383. doi:10.1207/s15324834basp1403_8.

Vollmann, M., Scharloo, M., Salewski, C., Dienst, A., Schonauer, K., & Renner, B. (2010). Illness representations of depression and perceptions of the helpfulness of social support: Comparing depressed and never-depressed persons. Journal of Affective Disorders, 125(1- 3), 213-220. doi:10.1016/j.jad.2010.01.075.

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Problems in cross-cultural use of the HADS: ‘No butterfl ies in the desert’

Chapter 4

Gemma A. Maters Robbert Sanderman

Aimee Y. KimJames C. Coyne

PLoS ONE 2013, 8(8): e70975. doi:10.1371/journal.pone.0070975


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AbstractObjective The Hospital Anxiety and Depression Scale (HADS) is widely used to screen for anxiety and depression. A large literature is citable in support of its validity, but difficulties are increasingly being identified, such as inexplicably discrepant optimal cutpoints and inconsistent factor-structures. This article examines whether these problems could be due to the construction of the HADS that poses difficulties for translation and cross-cultural use.

Methods Authors’ awareness of difficulties translating the HADS were identified by examining 20% of studies using the HADS, obtained by a systematic literature search in Pubmed and PsycINFO in May 2012. Reports of use of translations and validation studies were recorded for papers from non-English speaking countries. Narrative and systematic reviews were examined for how authors dealt with different translations.

Results Of 417 papers from non-English speaking countries, only 45% indicated whether a translation was used. Studies validating translations were cited in 54%. Seventeen reviews, incorporating data from diverse translated versions, were examined. Only seven mentioned issues of language and culture, and none indicated insurmountable problems in integrating results from different translations.

Conclusion Initial decisions concerning item content and response options likely leave the HADS difficult to translate, but we failed to find an acknowledgment of problems in articles involving its translation and cross-cultural use. Investigators’ lack of awareness of these issues can lead to anomalous results and difficulties in interpretation and integration of these results. Reviews tend to overlook these issues and most reviews indiscriminately integrate results from studies performed in different countries. Cross-culturally valid, but literally translated versions of the HADS may not be attainable, and specific cutpoints may not be valid across cultures and language. Claims about rates of anxiety and depression based on integrating cross-cultural data or using the same cutpoint across languages and culture should be subject to critical scrutiny.

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IntroductionThe Hospital Anxiety and Depression Scale (HADS, Zigmond & Snaith, 1983) is one of the most widely used questionnaires in clinical and health psychology worldwide, outside of the United States where it has not won as much favor. It has been translated into 78 languages (Patient-Reported Outcome and Quality of Life Instruments Database) for use in both western and non-western countries. The HADS is the most frequently used measure of mood disturbance in cancer care, where it has been applied in two-stage screening, assessment of severity of mood disturbance, and for validation of other measures (Mitchell, Meader, & Symonds, 2010). It was originally designed for clinicians with the aim of providing a short screening instrument assessing psychopathology in non-psychiatric medical patients. Based on the assumption that scores on existing mood scales were confounded with somatic complaints in medically ill patients, the developers of the HADS excluded items seen as overlapping with symptoms of a somatic disorder (Zigmond & Snaith, 1983). Explicit reference to psychiatric symptoms was avoided and colloquial British English was chosen for some items, notably “I get a sort of frightened feeling like ‘butterflies’ in the stomach”, and response options varied across items in terms of both wording and keying. The Depression subscale (7 items) was based mainly on symptoms of anhedonia, rather than depressed mood, because the authors assumed that the former symptoms would respond better to antidepressants. The Present State Examination (Wing, Cooper, & Sartorius, 1974), together with research into clinical manifestations of anxiety neurosis (Snaith, Baugh, Clayden, Husain, & Sipple, 1982), provided the basis for the 7-item Anxiety subscale. Reviews of the psychometric properties of the HADS have generally concluded that it has adequate sensitivity, case finding ability, concurrent validity and internal consistency (Bjelland, Dahl, Haug, & Neckelmann, 2002; Herrmann, 1997). The HADS continues to enjoy international use and wide endorsement as one of the best available measures of depression and anxiety both for screening purposes and assessment of symptom severity, but several difficulties are now being identified in the same literature. It is our purpose to explore the implications of these difficulties for translation and cross-cultural use and to evaluate whether investigators have handled the HADS with appropriate sensitivity to issues. The goal is to evaluate whether non-equivalence of the HADS across languages and cultures might explain problems in the generalizability of cutpoints and consistency of factor-structures that have been reported.

Issues raised in the recent literature concerning the HADSVodermaier et al’s (2009) review noted a troublingly broad, inconsistent range of optimal cutoffs obtained across studies, ranging from 8-22 for total score and 5-11 for depression and anxiety subscales. Singer et al (2008) also noted varying cutpoints between studies for the depression subscale, and suggested re-calculation of different cutpoints for distinct groups of patients. Carey et al (Carey, Noble, Sanson-Fisher, & Mackenzie, 2011) reported a wide range of recommended thresholds in their recent review of validation studies performed in cancer patients. A Danish study (Groenvold et al., 1999) unexpectedly found lower mean HADS scores in a sample of breast cancer patients relative to women of the general population, a result that challenges either the presumed greater levels of depression among cancer patients than in the general population, or the validity of the HADS as a means of establishing relative levels of depression.

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Cosco et al’s recent review (Cosco, Doyle, Ward, & McGee, 2012) of 50 studies concluded that factor-structures of the HADS varied across studies and within populations, with the particular factor solutions ranging from one to four factors, with findings dependent upon the specific analytic strategy employed. Inconsistencies were greatest with cancer patients, the medical population in which the HADS is the most widely used measure of anxiety and depression. Cosco et al concluded that the original intention of the HADS having a two factor-structure distinguishing between anxiety and depression had not been achieved, and that the HADS should be interpreted as an assessment of emotional distress that does not distinguish between anxiety and depression. Cosco et al recommended that “the absence of psychometric robustness suggests that researchers should interpret subscale scores with caution or use the total score.” In a pair of commentaries Coyne and Van Sonderen (Coyne & Sonderen Van, 2012; 2012) accepted Cosco et al’s conclusions concerning the basic factor-structure of the HADS, but disputed a recommendation for continued use of the HADS as a screening instrument, noting the inconsistencies in the cutpoints that were obtained within and across populations. They proposed that some problems might stem from decisions made in construction of the HADS, and particularly its deliberately varying response keys. They noted the consistently anomalous factor loading of item 7 (‘I can sit at ease and feel relaxed’), pointing out that it is a positively valence item, but with a reversed response key and different anchors than the item that just proceeded it. Coyne and Van Sonderen (Coyne & Sonderen Van, 2012) expressed doubt that even an exceedingly alert patient would notice and be responsive to these changes in what was being asked. To answer consistent with the intention of the design of the HADS, patients would have to be attentive to sudden changes back and forth between positive and reverse worded items and in the available response options:...six items alternate between positive and reverse worded items indicating negative affect, but the seventh item breaks with this pattern. Furthermore, going from item to item, the first available response option shifts from “most the time,” to “definitely as much,” to “very definitely and quite badly” to “as much as I always could,” to “a great deal of the time,” to “not at all,” to “definitely.” The “not at all” is for the item “I feel cheerful” and the “definitely” is for the item “I can sit at ease and feel relaxed.” A number of items are ambiguous as to whether they refer to actual level of negative affect or to a comparison with ‘usual’. We would add that when it comes to translating the HADS, it might prove difficult to preserve the comparability of positive versus reverse worded items, as well as the equivalence of the varying response key options across languages. Paralleling the problems of patients completing the HADS, translators might simply overlook these transitions, fail to capture them adequately in a second language, or they might improvise in an effort to compensate for problems that were recognized.

Four different Dutch versions of the HADSOur concerns about translation and cross-cultural use of the HADS were prompted when we discovered four different Dutch versions of the HADS (POP Expertisecentrum Amsterdam; Psychisch & Werk; Spinhoven et al., 1997; Van Hemert & Ormel, 1993). The four Dutch versions have different content for five (items 5, 7, 9, 11 and 13) of the 14 items, different response options

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in nine items (items 1, 2, 3, 4, 5, 7, 10, 11 and 14), different ranges of scores (0-4 or 1-3) and different timeframes (one week versus four weeks). Yet, we could find no indication in the published studies depending on a Dutch translation of the HADS that these multiple versions existed or which version was used, either among primary research studies using one of the versions, or in secondary discussions or integrations of results of the primary studies. The finding of four different Dutch versions was worrisome because the distinctions between these versions could conceivably prove substantial and there is little reason to presume that results could be generalized from one version to another. For generalizability across these four translations to hold, it would have to be assumed that results were not substantially influenced by differences in content, response options, or time frames. It would be extraordinary if this were the case. Thus, recommendations for cutpoints for Dutch translations are highly unlikely to generalize across versions, and integration of data from Dutch versions with the original English version or translations into other languages is likely problematic, particularly if the goal is identification of a cross-culturally valid cutpoint. We sought to determine how the translation of the HADS is being handled in other languages, whether potential problems were noted, and how they were being addressed.

Challenges in translating the HADSA review of translation methods by MAPI Research Trust (Acquadro, Conway, Hareendran, & Aaronson, 2008) concluded that recommendations for cross-cultural translations of questionnaires need further development and that a multistep approach was needed to obtain high quality translations. A checklist was provided in the review to assess the methods used in a translation process and to list actions taken. Producing a dependable, high quality translation is costly and labor intensive (Acquadro et al., 2008; Norman & Streiner, 2003). Several other papers already have paid attention to the complexity of producing a high quality translation, ways to reach equivalence across different languages and cultures, and problems that might arise in the translation process (Peña, 2007; e.g. Van de Vijver & Poortinga, 1997; Van Widenfelt, Treffers, de, Siebelink, & Koudijs, 2005; Weeks, Swerissen, & Belfrage, 2007). Adequate cultural adaptations of instruments are not easily achieved and with questionnaires usually not designed with anticipation of the issues posed for translation, it is difficult to ensure that items in a translated instrument are conceptually equivalent to the original version (Breugelmans, 2009). If not addressed carefully, the influence of language or culture might manifest in each of several ways. One possibility is a shift in mean scores. Another possibility is diminished validity, because the translated item measures something else than intended in the original version (Van Sonderen & Sanderman, 2007), as represented in different validity correlates. Subtle differences between questionnaires caused by translation of items or response options could lead to incomparable cutpoints. MAPI Research Trust in France is responsible for the distribution of HADS translations. They state “the author has selected MAPI Institute as exclusive linguistic validation company to ensure the production of harmonized and consistent language versions” (Patient-Reported Outcome and Quality of Life Instruments Database). Yet, MAPI did not carry out all translations and validations. The original developers of the HADS intended to make the items easy to translate into other languages (Snaith, 2003). But the question is whether they succeeded, and whether the apparent benefits of the reliance on colloquial British English for construction of items remain when the



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instrument is translated into other languages. An earlier guideline by Brislin et al (1973) cautioned against use of colloquialisms in a questionnaire because of the risk of subsequent difficulties in achieving an equivalent translation. So, reliance of the developers of the HADS on colloquial British language complicates the translation process, in addition to the existing complexity of achieving an adequate translation in itself. In preliminary work, we had sent an email inquiring about translation procedures to a sample of investigators. As anticipated, several of the colloquial items turned out to be difficult to translate into some languages. For instance, considerable effort was put into translating the item “I get a sort of frightened feeling like ‘butterflies’ in the stomach” into Omani Arabic dialect. The investigators recognized that they had to capture the intended feeling, and chose to do this in the audiotaped delivery of the item. In addition, the author of an Arabic version explained to us: “A lot of difficulties because this question of the butterflies appeared not only strange but rather funny to many Arabic-speaking individuals”. Translation of the response options turned out difficult in some languages as well. This is what the author of a Punjabi version replied: “The response options were difficult to translate, to get appropriate gradations between ‘all of the time’ and ‘most of the time’. The same word was commonly used in Punjabi for both of these responses”. Although not systematic, this preliminary work encouraged us to look further into the awareness of these issues on the part of investigators who were using translated versions and in reviews that integrated results from translated versions with results from the original English version. In sum, we had obtained preliminary indications that the HADS is not as easy to translate as intended by the developers and that unacknowledged problems might exist in translated versions.

Cultural awareness of investigators in their usage of the HADS.We next looked for remarks in HADS literature concerning problems that might have been caused by using translated versions. Surprisingly few concerns were expressed in literature about the use of translated versions of the HADS. Herrmann (1997) noted that scores on translated versions of the HADS might be influenced by cultural factors. As one of the possible explanations for the diverging thresholds, Carey et al (Carey et al., 2011) referred to the translated versions of the HADS used cross-culturally in the studies they reviewed. They noted that only one of the ten studies validating the HADS for use with cancer patients had used the original English-language version and that different translations might yield different factor-structures and optimal cutpoints. A study by Martin et al (Martin, Thompson, & Barth, 2008) in patients with coronary heart disease in three different countries suggested a three-factor structure. But the factor-structure turned out to be different among the three countries. Wang et al (2006) identified issues in factor-structure in the Chinese version of the HADS as possibly caused by difficulties in the translation of the HADS into Chinese. Similarly, a study by Chan et al (2010) indicated a two-factor structure, but also the loading of item 7 (‘I can sit at ease and feel relaxed’) on depression. Citations indicate the same Chinese translation was used in both studies. El-Rufaie and Absood (1995) concluded that differences in cutpoints of the Arabic HADS relative to the English version might have been caused by linguistic or cultural factors. Research conducted in Oman (Al-Adawi et al., 2007) compared HADS scores with the results of the Composite International Diagnostic Interview, in patients with Traumatic Brain Injury and found a sensitivity of 53.8% and specificity of 75.9%, but with an

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optimal cutpoint of only four. It was concluded that the poor performance of the HADS might have arisen in the process of translating the questionnaire into the Omani dialect. Chaturvedi (1990) pointed out how the results of studies with translated HADS versions in Asian participants could have been affected by cultural differences, commenting on a paper by Nayani (1989). In their recent review, Cosco and colleagues (2012) acknowledge the possibility of translation issues causing heterogeneity in factor-structures. But the tables and source papers in their article suggest different HADS language versions were nonetheless integrated. Overall, few concerns were expressed about the use of translated HADS versions and subsequent consequences, which made us suspicious of the awareness of investigators of these problems. We were concerned whether investigators who used a translation of the HADS identified the source of a translated version they used and measures taken to ensure proper validation. Van Widenfelt et al. (2005) observed that quite often articles fail to report the origin of translated questionnaires. In addition, we examined if authors of reviews integrate data from diverse cultures and translations and acknowledge difficulties in doing so. While HADS is our specific focus, other instruments, particularly those constructed in colloquial language, might pose the same issues when translated and used cross culturally.

Methods and ResultsReports of HADS translations and validity studies in papers originating from non-English speaking countriesWe were encouraged to examine how explicit and accurate investigators reported in their article about the translated version of the HADS, its provenience or, if it was translated by the investigators themselves, how validity was assured. A comprehensive search was performed in the Pubmed and PsycINFO databases in May 2012. Keywords were (“HADS”) OR (“HAD scale”) OR (“hospital anxiety” AND “depression” AND (“scale” OR “scales” OR “score” OR “scores” OR “subscale” OR “subscales” OR “sub-scale” OR “sub-scales”). After removal of duplicates, and citations for book chapters and comments and letters to the editor, 4555 references were left. To reduce the scope of the task, every fifth (20%) of the remaining abstracts were examined by one of the authors (GAM), and a research assistant. They examined 913 abstracts and removed references of papers that were written in another language than English (79) or in which the HADS had not actually been used, but only cited (4). For the remaining 830 abstracts, the country in which the research was conducted was recorded. For 15 papers the country could not be determined, because it was not mentioned in the abstract and the full text was not available either on the web or through interlibrary loan. A total of 345 articles originated from an English speaking country, of these 69% (237 papers) originated from the UK. Other identified English speaking countries were the USA, Australia, Canada and New Zealand. A total of 470 papers originated from non-English speaking countries (58%). Available full texts of the papers were examined (417). Country, indications of the use of translated HADS versions and documentation on the source of a translated version and its validity were recorded. Table 4.1 shows the results of our examination. The first column indicates the country in which the study was executed. Per country the total number of papers examined are reported (second column), as are the reports of authors on the language version used (third column). The number



58

of citations of studies validating a particular language version and the number of citations of the 1983 study by Zigmond and Snaith (Zigmond & Snaith, 1983) are indicated in the last two columns. As a specific illustration using results presented in Table 4.1, 34 papers originating from Norway were examined in total. Yet, only 9 out of the 34 papers indicated a Norwegian version of the HADS was used. The other 25 papers reported nothing about the version used. In the Norwegian case 30 out of 34 papers cited Zigmond and Snaith, but only 14 out of 34 papers cited a validation study of a Norwegian version of the HADS. On the whole, explicit reports of the use of a translated version of the HADS were outnumbered by articles making no statements at all about the version used; in only 45% did investigators state that they used a translated version of the HADS in their study and indicated the language. Of all papers from non-English speaking countries 46% did not cite a validation study in the language of their country and yet 13% did not even cite Zigmond and Snaith (1983). In conclusion, although the HADS was frequently used in non-English speaking countries, less than half of the papers originating from non-English speaking countries reported which particular HADS version was used and slightly more than half of the papers did report validation in the language to which the HADS was translated.

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Source country of papers

Number of papers examined per country

Reporting of use of translated versions of the HADS

Languages of HADS translations as reported by investigators

Number of citations of Zigmond and Snaith (1983)

Citations of validation studies with non-English versions

Austria 4 1 German 4 1

Belgium 4 0 ** 4 0

Brazil 12 4 Portuguese 12 6

Canada (French speaking part) 2 2 French - Canadian 2 2

China 19 18 Chinese, Chinese – Cantonese, Mandarin 16 17

Denmark 9 2 Danish 8 2

France 29 4 French 21 11

Germany 38 22 German 30 29

Greece 11 3 Greek 11 5

Holland 55 25 Dutch 45 33

Iceland 5 4 Icelandic 5 4

India 5 2 Malayalam, Urdu 5 3

Iran 6 6 Iranian, Persian 5 6

Israel 4 1 Hebrew 3 1

Italy 24 10 Italian 23 9

Japan 25 20 Japan 23 19

Jordan 2 0 ** 2 1

Kosovo 1 0 ** 1 0

Lithuania 4 0 ** 4 2

Malaysia 3 2

Malay, Bahasa Malay, Mandarin- Chinese and Tamil 2 1

Table 4.1 Reports of translated HADS versions used, citations of the Zigmond and Snaith 1983 study and citations of validation studies with non-English HADS versions, by investigators in non-English speaking countries.



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** The article(s) did not report the language version of the HADS used

Integration of data from different language versions of the HADS in reviewsSeventeen reviews, including two meta-analyses (Bjelland et al., 2002; Brennan, Worrall-Davies, McMillan, Gilbody, & House, 2010; Brodersen, Thorsen, & Cockburn, 2004; Carey, Noble, Sanson-Fisher, & Mackenzie, 2012; Cosco et al., 2012; Herrmann, 1997; Hotopf, Chidgey, Addington-Hall, & Ly, 2002; Lim, Devi, & Ang, 2011; McPherson & Martin, 2011; Meades & Ayers, 2011; Mitchell et al., 2010; Rooney, Carson, & Grant, 2011; Thombs et al., 2006; Thombs et al., 2007; Vodermaier et al., 2009; Wasteson et al., 2009; Ziegler et al., 2011), that integrated studies with at least two different language versions of the HADS, were next extracted from our database. These papers were examined by GAM and AYK for the strategies that the authors reported to deal with different language versions, the way different versions were compared and reports of possible problems and corrective actions concerning language or culture. Table 4.2 summarizes the results of our examination. The Table shows which language versions were compared to each other, and in

Morocco 1 1 Arabic 1 1

Nigeria 1 0 ** 1 1

Norway 34 9 Norwegian 30 14

Palestine 1 0 ** 1 0

Poland 3 0 ** 2 0

Portugal 6 5 Portuguese 6 6

Russia 1 0 ** 0 0

Singapore 2 0 ** 2 1

South Korea 8 6 Korean 7 6

Spain 18 11 Spanish 16 11

Sweden 43 11 Swedish 42 9

Switzerland 11 6 German 9 7

Taiwan 7 2 Chinese-Cantonese 4 3

Thailand 2 1 Thai 1 1

Turkey 17 11 Turkish 13 14

Total 417 189 361 226

Source country of papers

Number of papers examined per country

Reporting of use of translated versions of the HADS

Languages of HADS translations as reported by investigators

Number of citations of Zigmond and Snaith (1983)

Citations of validation studies with non-English versions

Austria 4 1 German 4 1

Belgium 4 0 ** 4 0

Brazil 12 4 Portuguese 12 6

Canada (French speaking part) 2 2 French - Canadian 2 2

China 19 18 Chinese, Chinese – Cantonese, Mandarin 16 17

Denmark 9 2 Danish 8 2

France 29 4 French 21 11

Germany 38 22 German 30 29

Greece 11 3 Greek 11 5

Holland 55 25 Dutch 45 33

Iceland 5 4 Icelandic 5 4

India 5 2 Malayalam, Urdu 5 3

Iran 6 6 Iranian, Persian 5 6

Israel 4 1 Hebrew 3 1

Italy 24 10 Italian 23 9

Japan 25 20 Japan 23 19

Jordan 2 0 ** 2 1

Kosovo 1 0 ** 1 0

Lithuania 4 0 ** 4 2

Malaysia 3 2

Malay, Bahasa Malay, Mandarin- Chinese and Tamil 2 1

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what way (column 4 and 5). In the last column of the Table all comments by the authors of the reviews, if any, about language or culture are listed. Seven papers did not mention that they included studies with several different translated versions (Brodersen et al., 2004; Cosco et al., 2012; Hotopf et al., 2002; Mitchell et al., 2010; Thombs et al., 2006; Thombs et al., 2007; Wasteson et al., 2009), although we could determine that they did so by examining citations and source articles. Few concerns or problems were reported about reliance on translations. Bjelland et al (2002) raised concerns on the reliability of the HADS across translations. But they argued against this being a problem, citing Cronbach’s coefficient alphas of ≥.60 in all studies. However, such reliability does not establish comparability. Bjelland et al also calculated a mean cutpoint >8 on the anxiety and depression subscales for cancer patients. Yet, examining the original source papers we discovered that the mean cutpoint was calculated from one study with an Italian version, two studies with a French version, one study with a Japanese version and five studies with the original British version (including one study executed in South Africa). In the original source paper of the Italian study no specific information is provided on the origin or quality of the used translation (Costantini et al., 1999). One of the French studies reported that the HADS was translated into French by Zigmond and Snaith (Zigmond & Snaith, 1983) and validated by Lepine (1985: paper in French) and Razavi (1989: paper in French), but it is difficult to evaluate the quality of the translations from the information that was provided. The Japanese study mentioned a back translated Japanese version by Kitamura (1993: paper in Japanese). Thus, examining the original source papers did not yield a clear picture of the quality of the different translated versions, and so the calculated mean cutpoint across countries could be of dubious value. Herrmann (1997) warned that scores could vary across cultures, and validity studies have not been performed for all translated versions. So, the review by Herrmann (1997) stands out as an exception in which it is stated that culture or language has to be taken into account. Vodermaier et al (2009) concluded there is considerable evidence for HADS validity in different languages, relative to other measures used for research in cancer care, although cutpoints differed between studies. A recent meta-analysis by Brennan et al (2010) inspected the possible contribution of translation to heterogeneity, with a fixed cutpoint. Based on a diagnostic odds ratio of .72 they decided against it. On the other hand, the paper by Carey et al (Carey et al., 2012) explicitly mentioned how culture might influence HADS thresholds. And Meades and Ayers (Meades & Ayers, 2011) referred to cultural or psychometric factors contributing to problems with the internal consistency, factor-structures and cutpoints. In sum, attention paid to translation and cross-cultural issues is limited in the reviews that we examined. The authors of most review papers indiscriminately compared results obtained with different language versions of the HADS without acknowledgment.



62

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prop

ertie

s of s

cree

ning

m

easu

res f

or a

ffect

ive,

an

xiet

y, a

nd a

djus

tmen

t di

sord

ers i

n ca

ncer

pat

ient

s

41

The

psyc

hom

etric

pro

perti

es w

ere

eval

uate

d an

d ra

ted

with

dec

isio

n ru

les

(rega

rdin

g re

liabi

lity,

crit

erio

n m

easu

re

and

valid

ity).

In th

e pa

per i

s sta

ted

that

twen

ty

wer

e no

n-En

glis

h: th

ree

Fren

ch,

thre

e G

erm

an, o

ne G

reek

, one

H

unga

rian,

one

Indi

an, t

wo

Italia

n,

five

Japa

nese

, one

Per

sian

, one

Sl

oven

ian,

one

Sw

edis

h an

d on

e Tu

rkish

). A

lso, o

ne w

as fr

om a

So

uth

Euro

pean

pop

ulat

ion.

The

re

st (t

wen

ty) a

re p

roba

bly

in

Engl

ish.

"The

mos

t ext

ensi

ve v

alid

atio

n ex

iste

d fo

r the

HA

DS,

and

this

was

the

case

acr

oss d

iseas

e ty

pes a

nd st

ages

as w

ell a

s acr

oss l

angu

ages

and

cu

lture

s. Th

e sc

ale

has b

een

exte

nsiv

ely

test

ed a

gain

st cr

iterio

n st

anda

rds."

Was

teso

n et

al

(200

9)

Syst

emat

ic li

tera

ture

revi

ew:

to fi

nd o

ut w

hat m

easu

res

have

bee

n us

ed fo

r dep

ress

ion

case

s in

studi

es in

volv

ing

palli

ativ

e ca

ncer

pat

ient

s.

76

Freq

uenc

y of

usa

ge fo

r dep

ress

ion

asse

ssm

ent.

N

ot st

ated

in th

e pa

per.

How

ever

, fro

m th

e lis

t of r

efer

ence

s we

coul

d un

ders

tand

that

tran

slatio

ns in

se

vera

l diff

eren

t lan

guag

es w

ere

used

, e.g

. Gre

ek, J

apan

ese

and

Italia

n. B

ut a

lso th

e En

glis

h ve

rsio

n.

Non

e, b

ut re

gion

al d

iffer

ence

s in

the

usag

e of

HA

DS

are

men

tione

d.

Tabl

e 4.

2 Re

port

s of t

rans

late

d H

ADS

vers

ions

use

d, a

nd o

f cor

rect

ive

actio

ns a

nd q

ualifi

catio

ns co

ncer

ning

lang

uage

and

cul

ture

in re

view

s tha

t int

egra

ted

stud

ies w

ith d

iffer

ent l

angu

age

vers

ions

of t

he H

ADS.


63

Ref

eren

ce

Typ

e of

pap

er a

nd p

aper

ob

ject

ive

N

umbe

r of

st

udie

s in

pape

r in

volv

ing

the

HA

DS

Rep

orts

of t

ype

of c

ompa

riso

n of

di

ffer

ent H

AD

S ve

rsio

ns

Rep

orts

of l

angu

ages

of H

AD

S, if

us

ed in

non

-Eng

lish

coun

trie

s.

Rep

orts

of c

orre

ctiv

e ac

tions

or

qual

ifica

tions

con

cern

ing

lang

uage

an

d cu

lture

Car

ey e

t al.,

(2

012)

Li

tera

ture

revi

ew; t

o as

sess

st

udie

s in

whi

ch th

e H

AD

S is

be

ing

valid

ated

aga

inst

the

SCID

and

to c

ompa

re

reco

mm

ende

d cu

t poi

nts w

ith

actu

al u

se o

f cut

poi

nts b

y in

vest

igat

ors.

10

Two

auth

ors r

evie

wed

all

stud

ies,

acco

rdin

g to

pre

dete

rmin

ed c

riter

ia

(e.g

. on

sam

ple

appr

opria

tene

ss,

repo

rting

of p

reci

sion

est

imat

es a

nd

relia

bilit

y of

the

SCID

).

The

coun

try (s

ettin

g) o

f the

sour

ce

pape

rs is

repo

rted

in a

Tab

le. F

rom

th

is ta

ble

we

coul

d un

ders

tand

that

tra

nsla

tions

in G

erm

an, I

talia

n,

Japa

nese

, Tur

kish

, Fle

mis

h or

Fr

ench

(stu

dy p

erfo

rmed

in

Bel

gium

), w

ere

used

. But

also

the

Engl

ish

vers

ion.

“Of t

he 1

0 ca

ncer

val

idat

ion

studi

es id

entif

ied

for t

he H

AD

S us

ing

the

SCID

as a

gol

d sta

ndar

d, o

nly

one

was

con

duct

ed u

sing

the

Engl

ish

lang

uage

ver

sion

of t

he H

AD

S. V

alid

atio

n stu

dies

of d

iffer

ent l

angu

age

vers

ions

of t

he H

AD

S ha

ve b

een

asso

ciat

ed w

ith d

iffer

ent f

acto

r st

ruct

ures

(Myk

letu

n, S

tord

al, &

Dah

l, 20

01) a

nd o

ptim

al th

resh

olds

for

iden

tifyi

ng c

asen

ess (

Bje

lland

et a

l., 2

002)

. It h

as b

een

sugg

este

d th

at

HA

DS

thre

shol

ds m

ay v

ary

cros

s cul

tura

lly a

s a re

sult

of v

aria

tions

in

the

sym

ptom

atic

pre

sent

atio

n of

anx

iety

and

dep

ress

ion

(Her

rman

n,

1997

; Kirm

ayer

, 198

9; K

irmay

er, Y

oung

, & H

ayto

n, 1

995)

. For

ex

ampl

e, it

has

bee

n su

gges

ted

that

cul

ture

may

influ

ence

whe

ther

de

pres

sion

is e

xpre

ssed

in e

mot

iona

l and

psy

chol

ogic

al te

rms o

r whe

ther

it

is m

anife

sted

as p

hysi

cal s

ympt

oms (

Laub

er &

Ros

sler,

2007

). A

s di

ffere

nt it

ems w

ithin

the

HA

DS

focu

s eith

er o

n ph

ysic

al o

r ps

ycho

logi

cal s

ympt

oms,

endo

rsem

ent o

f diff

eren

t com

bina

tions

of

item

s in

a gi

ven

popu

latio

n w

ill a

lter t

he sp

ecifi

city

and

sens

itivi

ty o

f a

give

n th

resh

old

for d

efin

ing

case

ness

(Cla

rke

& M

cKen

zie,

199

4).

Ther

efor

e, o

ne m

ight

exp

ect t

hat t

he th

resh

old

for d

efin

ing

case

ness

may

va

ry b

etw

een

cultu

res d

epen

ding

on

the

way

in w

hich

cul

tura

l nor

ms

influ

ence

resp

onde

nts’

ans

wer

s”. …

.“V

alid

atio

n stu

dies

con

duct

ed w

ith

HA

DS

in c

ance

r pop

ulat

ions

offe

r litt

le c

onsi

sten

cy w

ith re

spec

t to

the

thre

shol

ds; t

his i

s pos

sibly

cau

sed

by v

aria

bilit

y w

ithin

the

patie

nt-w

ith-

canc

er p

opul

atio

ns in

term

s of c

ultu

re, d

isea

se st

age,

trea

tmen

t sta

tus a

nd

type

of d

isea

se a

cros

s the

stud

ies”


64

Ref

eren

ce

Typ

e of

pap

er a

nd p

aper

ob

ject

ive

N

umbe

r of

st

udie

s in

pape

r in

volv

ing

the

HA

DS

Rep

orts

of t

ype

of

com

pari

son

of d

iffer

ent

HA

DS

vers

ions

Rep

orts

of l

angu

ages

of H

AD

S, if

use

d in

no

n-E

nglis

h co

untr

ies.

R

epor

ts o

f cor

rect

ive

actio

ns o

r qu

alifi

catio

ns c

once

rnin

g la

ngua

ge

and

cultu

re

Cos

co e

t al.,

(2

012)

Sy

stem

atic

lite

ratu

re re

view

: to

revi

ew th

e fa

ctor

stru

ctur

e of

the

HA

DS.

50

Two

auth

ors r

evie

wed

all

stud

ies a

nd re

porte

d on

sa

mpl

e, a

s wel

l as m

etho

ds

and

resu

lts o

f fac

tor a

naly

ses.

Res

ults

wer

e pr

esen

ted

by

met

hods

use

d (E

FA, C

FA,

IRT)

and

pop

ulat

ion.

Not

stat

ed in

the

artic

le. O

rigin

al so

urce

s in

dica

te C

hine

se, D

utch

, Spa

nish

, N

orw

egia

n, P

ortu

gues

e, F

renc

h, U

zbek

, G

erm

an, G

reek

, Hun

garia

n, S

wed

ish

and

Japa

nese

ver

sion

s wer

e in

clud

ed, a

s wel

l as

the

orig

inal

Eng

lish

vers

ion.

Non

e.

Lim

et a

l.,

(201

1)

Syst

emat

ic li

tera

ture

revi

ew:

to a

sses

s evi

denc

e on

anx

iety

le

vel a

nd c

ontri

butin

g fa

ctor

s of

wom

en u

nder

goin

g tre

atm

ent f

or b

reas

t can

cer.

3, b

ut o

nly

two

of th

em w

ere

com

-par

ed to

ea

ch o

ther

.

Two

inde

pend

ent r

evie

wer

s ex

amin

ed a

ll pa

pers

and

ex

tract

ed d

ata

usin

g tw

o st

anda

rdiz

ed d

ata

extra

ctio

n to

ols (

JBI-M

ASt

AR

I).

A S

wed

ish

and

orig

inal

Eng

lish

vers

ion

of

the

HA

DS

wer

e re

porte

d.

Non

e.

McP

hers

on &

M

artin

(201

1)

Nar

rativ

e lit

erat

ure

revi

ew: t

o as

sess

the

suita

bilit

y of

the

HA

DS

as a

scre

enin

g to

ol in

an

alc

ohol

-dep

ende

nt

popu

latio

n.

28 to

exa

min

e fa

ctor

ana

lysi

s, 5

to e

xam

ine

test

-rete

st

relia

bilit

y an

d 26

to d

eter

min

e in

tern

al

cons

isten

cy

relia

bilit

y.

Fact

or a

naly

sis a

nd re

liabi

lity

of th

e H

AD

S in

seve

ral

popu

latio

ns w

ere

asse

ssed

by

two

auth

ors.

Fact

or a

naly

sis;

Dut

ch, G

erm

an, F

renc

h,

Span

ish, U

zbek

, Chi

nese

, Gre

ek, N

orw

egia

n,

Portu

gues

e an

d En

glis

h. T

est-r

etes

t re

liabi

lity:

Eng

lish,

Uzb

ek, C

hine

se, G

reek

, Po

rtugu

ese.

In

tern

al c

onsi

stenc

y re

liabi

lity;

En

glis

h, U

zbek

, Spa

nish

, Gre

ek, H

unga

rian,

Ira

nian

, Nor

weg

ian,

Por

tugu

ese,

Chi

nese

.

“The

Pai

s-R

ibei

ro e

t al.

(200

7) st

udy

[61]

look

ed a

t a m

ultic

linic

al

Portu

gues

e sa

mpl

e an

d th

e lo

w te

st-re

test

scor

e m

ay b

e du

e in

par

t to

the

trans

latio

n of

the

HA

DS

or so

me

othe

r crit

erio

n”.


65

Ref

eren

ce

Typ

e of

pap

er a

nd p

aper

ob

ject

ive

N

umbe

r of

st

udie

s in

pape

r in

volv

ing

the

HA

DS

Rep

orts

of t

ype

of

com

pari

son

of d

iffer

ent

HA

DS

vers

ions

Rep

orts

of l

angu

ages

of H

AD

S, if

use

d in

no

n-E

nglis

h co

untr

ies.

R

epor

ts o

f cor

rect

ive

actio

ns o

r qu

alifi

catio

ns c

once

rnin

g la

ngua

ge

and

cultu

re

Mea

des &

A

yers

, (20

11)

Syst

emat

ic li

tera

ture

revi

ew;

to re

view

que

stio

nnai

res i

n pe

rinat

al p

opul

atio

ns.

3 A

com

bine

d ch

eckl

ist w

as

used

to a

sses

s stu

dy q

ualit

y (e

.g. r

epor

ting

on sa

mpl

e an

d re

liabi

lity)

.

Orig

inal

Eng

lish

vers

ion,

Uzb

ek a

nd

Nig

eria

n.

“Des

pite

exc

elle

nt se

nsiti

vity

and

spec

ifici

ty, l

ow in

tern

al c

onsi

stenc

y an

d di

scre

panc

ies i

n fa

ctor

stru

ctur

e an

d th

e pr

eval

ence

of p

roba

ble

anxi

ety

diso

rder

iden

tifie

d us

ing

the

reco

mm

ende

d cu

t-off

of 8

are

a c

once

rn,

alth

ough

thes

e m

ay b

e du

e to

cul

tura

l or m

etho

dolo

gica

l diff

eren

ces”

.

Roo

ney

et a

l. (2

011)

N

arra

tive

liter

atur

e re

view

; to

revi

ew st

udie

s on

depr

essi

on

in p

rimar

y ce

rebr

al g

liom

a.

10

Four

cat

egor

ies o

f clin

ical

as

soci

atio

ns w

ere

asse

ssed

; pa

tient

-rela

ted,

tum

or-re

late

d,

treat

men

t-rel

ated

and

ou

tcom

e-re

late

d.

A S

pani

sh v

ersi

on a

nd th

e or

igin

al E

nglis

h ve

rsio

n (9

stud

ies)

. N

one.

Zieg

ler e

t al.

2011

) Sy

stem

atic

lite

ratu

re re

view

; to

revi

ew th

e va

lidity

of

distr

ess m

easu

res,

in c

ance

r ca

re.

13

Psyc

hom

etric

pro

perti

es o

f se

lf-re

port

mea

sure

s, in

st

udie

s com

parin

g th

e qu

estio

nnai

res w

ith a

SC

ID,

wer

e re

view

ed in

diff

eren

t ph

ases

of t

he c

ance

r tra

ject

ory;

pre

-trea

tmen

t, du

ring

activ

e tre

atm

ent,

post

-tre

atm

ent a

nd d

urin

g pa

lliat

ive

care

.

Pre-

treat

men

t: O

rigin

al E

nglis

h, Ja

pane

se

and

Italia

n. A

ctiv

e tre

atm

ent;

Orig

inal

En

glis

h an

d Ita

lian.

Pos

t-tre

atm

ent:

Japa

nese

, Ita

lian

and

Ger

man

. Dur

ing

palli

ativ

e ca

re:

Japa

nese

and

Orig

inal

Eng

lish.

Non

e.


66

DiscussionOur discovery of four different Dutch versions of the HADS triggered concerns over whether cross-cultural and translation issues cause problems in the wide usage and interpretation of this instrument worldwide. Our concerns were consistent with problems increasingly raised in HADS literature concerning varying cutpoints and factor-structures. The aim of this paper was to investigate the possibility that cross-cultural and translation issues are underlying to the reported problems in HADS literature. Examination of a sample of abstracts from papers on studies using the HADS showed this questionnaire was used more often in non-English speaking countries than in English speaking countries. Thus, integrative reviews and meta-analyses of cutpoints and correlates of the HADS that do not distinguish between studies conducted in different languages are relying more on translated versions than the original English version. Yet, most papers originating from non- English speaking countries did not report the version of the HADS used, and only slightly more than half of all papers report whether it was validated in the language of the participants. In the reviews and meta-analyses we examined, cross-cultural issues were addressed in only seven of the seventeen papers (Bjelland et al., 2002; Brennan et al., 2010; Carey et al., 2012; Herrmann, 1997; Meades & Ayers, 2011; Vodermaier et al., 2009). Others uncritically combined studies conducted in different cultures and languages (Brodersen et al., 2004; Cosco et al., 2012; Hotopf et al., 2002; Lim et al., 2011; McPherson & Martin, 2011; Mitchell et al., 2010; Rooney et al., 2011; Thombs et al., 2006; Thombs et al., 2007; Wasteson et al., 2009; Ziegler et al., 2011). Thus, cultural awareness of investigators concerning the HADS turned out unsatisfactory in our sample. We believe that the inattention to problems in translating the HADS can explain at least some of the problems in varying cutpoints across studies as well as inconsistencies in factor-structure. These problems can be compounded when data from translated versions are integrated across studies in narrative and systematic reviews. However, documentation exists of varying cutpoints and factor-structures in when studies are limited to English-speaking populations with the unaltered original instrument, and so use of the translated HADS alone cannot explain more pervasive problems. This paper indicates considerable room for improvement in terms of transparency and accuracy on the part of investigators regarding the origin of version of the HADS used. This is likely a more general issue in the reporting of studies using translated questionnaires (Van Widenfelt et al., 2005). We strongly recommend that journals publicize requirements for explicit reporting of the information concerning translation and revalidation in any cross-cultural use of the HADS or other translated questionnaires. According to the Scientific Advisory Committee of the Medical Outcomes Trust (Scientific Advisory Committee of the Medical Outcomes Trust, 2002) for others to be able to review the quality of the translation and cultural adaptation of a questionnaire, the following information should be made available by the developers: how linguistic and conceptual equivalence were reached, whether any differences exist between the original and the new version, and how inconsistencies where dealt with. Acquadro et al (2008) further provide a checklist to assess the information reported in articles concerning the process of translation and revalidation by. To be able to use this checklist, detailed information on the method of translation used, the translators involved and the qualification, any communications with the developer(s)

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67

of the original version, pilot testing and “International Harmonization” is needed. Analogously, we suggest that investigators dependent on an already translated tool to report in their papers at the minimum: the language or dialect into which the HADS was translated, how the translated version was obtained, whether the quality of the translation process and the result of this process were reviewed and if a validation study was conducted with the translated version. Lacking information on the quality of a translation and validation of a questionnaire, readers cannot be certain that problems in the language or the cross-cultural usage of the HADS did not bias or even invalidate the results of the study. Yet, published studies reviewing or using the HADS have consistently assumed that different versions are comparable enough so that any differences can be ignored. We caution that our review was not exhaustive, but was based on a sampling of 20% of papers with results dependent on the HADS. However, our efforts meet the Black Swan criterion: we think that we have found sufficient documentation of problems in the translation and interpretation of the HADS to reject the null White Swan hypothesis of no problems in the translation or cross-cultural interpretation of the HADS. Yet, we need to start to ensure that our measures – as the HADS - across languages/cultures are measuring exactly the same so that we can trust comparisons of data collected in different languages. The problems that we have identified with the cross-cultural use of the HADS may not be specific to this instrument, but endemic to translated versions of other instruments, and particularly in those deliberately constructed in colloquial language, these problems may even be more pervasive. The Edinburgh Postpartum Depression Scale (Cox, Holden, & Sagovsky, 1987) embraces British colloquial language with the item ‘Things are getting on top of me’, which must strike many Americans as odd and confusing. Similarly, the item on the Beck Depression Inventory (Beck, Ward, Mendelson, Mock, & Erbaugh, 1961), ‘I feel sad and blue’ will perplex respondents confronting the item in languages like Italian where “blue” does not have the affective connotation as in English. Translators would seem to do best to avoid attempting literal translations of colloquialisms, but then run the risk of not being able to establish exact equivalency at the item level, and possibly the scale level. Based on the limited number of reports we obtained for investigators using the HADS cross-culturally, we suspect that considerable improvisation occurs and therefore inconsistency in results in the translation of other scales. In conclusion, we think the issues currently being raised in HADS literature concerning inexplicably varying factor-structures and cutpoints might very well be created in part or amplified by translation and cross-cultural problems. Results obtained with translated versions of the HADS should be treated with caution. Because most investigators in this study were not explicit on the way the translated version was acquired and how validation was ensured, there is no guarantee that authors handled the HADS in a proper culturally sensitive way. Our results strongly suggest that readers of published cross-cultural studies should have some skepticism about the validity of findings and that future publications should better document exactly what was done to ensure the cross-cultural validity of translated versions and generalizations from results obtained in other cultures and languages. If other questionnaires are being handled in the same way by investigators, this warning applies to these measures too.



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Identifying patients with COPD in need for psychosocial care through screening with

the HSCL-25 and the CCQ Mental State

Chapter 5

Gemma A. Maters Grieteke Pool

Robbert Sanderman Johan B. Wempe

Joke Fleer

COPD: Journal of Chronic Obstructive Pulmonary Disease, 2018, 15(1), 60-64. DOI: 10.1080/15412555.2017.1401989


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AbstractHigh levels of psychological distress are documented in patients with COPD. This study investigates the extent to which patients with a high score on the Hopkins Symptoms Checklist- 25 (HSCL-25) or with a high score on the Mental State scale of the Clinical COPD Questionnaire (CCQ) endorse a need for psychosocial care, and investigates several characteristics of patients with a need. Outpatients with COPD of the Department of Pulmonary Diseases of a University Medical Center were assessed with the HSCL-25, CCQ and a question on need for psychosocial care. For patients indicating a need, the percentage of patients with HSCL-25 ≥39 was compared with the percentage of patients with CCQ Mental State>2 and tested with a Chi-square. In total 323 patients participated; 57% of them were distressed according to the HSCL-25 (≥39) and 20% according to the CCQ Mental State (>2); 28% reported a need for psychosocial care. For patients reporting a need for psychosocial care a higher percentage was identified by the HSCL-25 than by the CCQ Mental State (χ2=9.41, p<.002) and they were younger than patients without a need (t=4.48, p<001). No differences existed for sex, FEV1, FEV1 %predicted or medical comorbidities. The HSCL-25 identified more patients in need than the CCQ Mental State scale. However, not all patients with a need were identified. No relationship was found between need for psychosocial care and illness variables or comorbidities. Distress screening is questioned as the most effective way to identity patients with COPD in need for psychosocial care.

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IntroductionCoping with a progressive disease such as COPD may induce high levels of distress. Being distressed means that a person experiences symptoms of anxiety and/or depression. Studies investigating distress in patients with COPD indeed report high levels of both anxiety and depression (Yohannes, Willgoss, Baldwin, & Connolly, 2010), with meta-analyses showing pooled prevalence rates as high as 40% for depressive symptoms and 36% for anxiety (Yohannes, Baldwin, & Connolly, 2000). The consequences of under-treatment of high psychological distress levels may be serious, as distress conceivably negatively affects functional status, dyspnea, exacerbation risk, quality of life, treatment adherence and even survival (Atlantis, Fahey, Cochrane, & Smith, 2013; de Voogd et al., 2009; DiMatteo, Lepper, & Croghan, 2000; Eisner et al., 2010; Jennings, Digiovine, Obeid, & Frank, 2009; Yohannes et al., 2010). However, under-treatment of distress in patients with COPD frequently occurs due to under identification by physicians, amongst other things, (Kim et al., 2000; Kunik et al., 2005; Regvat, Zmitek, Vegnuti, Kosnik, & Suskovic, 2011), who have limited time available for their patient consultations and often are unfamiliar with symptoms of psychological distress (Maurer et al., 2008; Pincus, 2003). In order to increase the identification of patients with COPD in need for psychological treatment, routinely screening for psychological distress by means of self-report measures has been advocated (Cafarella, Effing, Usmani, & Frith, 2012; Garvey, 2012; Maurer et al., 2008; Obradovic et al., 2012; von Leupoldt, Fritzsche, Trueba, Meuret, & Ritz, 2012). This recommendation implies that screening leads to successfully identifying patients in need for psychological care. However, scientific literature concerning other somatic illnesses shows that high distress levels are not by definition statistically related to a concurrent need for psychosocial care (Fleer et al., 2013; van Scheppingen et al., 2011). For example, Van Scheppingen et al. (van Scheppingen et al., 2011) found that, irrespective of distress levels, only 10% of a sample of cancer patients indicated an unmet need for psychosocial care. To the best of our knowledge, no studies have looked into the association of (high) distress levels and need for psychosocial care in patients with COPD. The existence of such an association seems an important prerequisite for the decision to implement psychological distress screening in COPD care. As the literature in this field shows that psychological distress levels are not per se related to a need for professional psychosocial care, the first aim of the present study is to examine the screening capacities of a specific distress measure (i.e. the HSCL-25 (Derogatis, Lipman, & Rickels, 1973)) and the Mental State scale of a COPD-specific health status measure (i.e. CCQ (van der Molen et al., 2003)), to identify patients with a need for psychosocial care. Given the stronger focus of the HSCL-25 on psychological distress, we hypothesize that the HSCL-25 is better capable of identifying patients with a need (met or unmet) for psychosocial care than the CCQ Mental State. The second aim of the study is to identify several characteristics of patients who endorse a need for psychosocial care. We hypothesize that patients with COPD in poor medical health, i.e. those with worse lung function and more comorbidities, report a higher need for psychosocial care (Schneider, Jick, Bothner, & Meier, 2010).

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Materials and methodsParticipants and procedureOutpatients with COPD of the outpatient clinic for Pulmonary Medicine of the University Medical Center Groningen (UMCG) were approached for this study between January 2010 and July 2011. Participants in this study were recruited as part of the screening procedure for a multicenter RCT on the effectiveness of psychological treatment in individuals with COPD. Inclusion criteria were a diagnosis with COPD, according to the GOLD criteria (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018) and being able to fill out questionnaires. Patients were excluded when no medical history was available. Patients were sent screening questionnaires and an informed consent form, two weeks prior to scheduled visit. A letter was enclosed in which the purpose of the screening was explained and patients were asked to bring the completed questionnaires and signed informed consent to the visit. Two days prior to the visit patients received a phone call from a research assistant, to remind them about the study. According to Dutch law, no further Institutional Review Board approval was required.

MeasuresAge, sex and recent (<6 months) spirometry data were derived from medical records for both respondents and non-respondents. In addition, medical comorbid conditions were registered from the medical records only for respondents. Distress was assessed with: (1) the Dutch version of the Hopkins Symptom Check list-25 (HSCL-25 (Kleijn, Hovens, Rodenburg, & Rijnders, 1998). Each item is scored on a 4-point scale, ranging from 1 (never) to 4 (always). A total score is calculated, with a higher score indicating more distress. A cut-off score of ≥39 was used to indicate high levels of distress (Veijola et al., 2003).(2) The Dutch version of the Clinical COPD Questionnaire (CCQ) (van der Molen et al., 2003). This 10-item self-report measure is originally developed to assess the broad concept of health status and is widely used in clinical context. It covers three domains: Functional State, Mental State and Symptoms. All items are scored on a 7-point scale, ranging from 0 (asymptomatic/no limitation) to 6 (extremely symptomatic/totally limited). The Mental Sate subscale consists of two questions. In clinical practice, a Mental State score cut-off of >2 is often used as an indicator for distress (Long Alliantie Nederland, 2016) A higher total score indicates a worse COPD health status and a total score cut-off of ≥3 is often used as an indicator for poor COPD health status (very instable-very severe limited health status) (Tsiligianni, 2013). Need for psychosocial care was assessed with a single question: ‘Would you like to talk to a healthcare provider about any potential problem you are experiencing?’ Patients who answered ‘Yes’, ‘Maybe’ or ‘No, because I already receive treatment from a healthcare provider (for instance, a psychologist, psychiatrist or social worker)’ were considered to have a need for professional psychosocial care. Patients who answered ‘No, I don’t need it’ were considered to have no need for psychosocial care.

Statistical analysesFor all analyses SPSS 20 for Windows (SPSS inc, Chicago, Illinois) was used. First descriptive statistics (means and percentages) were used to compare respondents and non-respondents on

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mean age, sex and FEV1. Then, percentages of patients were calculated with high distress levels (HSCL-25≥39 or CCQ Mental State>2) or a poor health status (CCQ≥3) for patients with a need for psychosocial care. They were compared with a Pearson Chi-square test. Descriptive statistics (means and percentages) were calculated for patients with a need/no need for psychosocial care.

ResultsDescriptivesThe characteristics of respondents are shown in Table 5.1. Out of 420 eligible patients, 323 patients (77%) completed the screening questionnaires (Figure 5.1). Respondents and non- respondents did not differ in mean age (t=.06, p=.93), sex (χ2=.00, p=.96) and FEV1 (t= -1.52, p=.13). With respect to need for care, results show that 72% (n=232) reported no need for psychosocial care and 28% (n=91) did indicate a need for psychosocial care (i.e. 5% yes, 7% maybe, 15% I already receive treatment from a healthcare provider). The reliability (Cronbach’s α) of both the HSCL-25 and the CCQ was good in this sample (respectively α= .94 and α=.90). The correlation between the HSCl-25 and the CCQ Mental State was moderate (r=.59), as well as the correlation between the HSCL-25 and the CCQ Total Score (r=.59). As to be expected, the correlation between the CCQ Mental State and the CCQ Total Score was high (r=.73).

Capacities of the HSCL-25 and the CCQ Mental State to identify those in need for psychosocial careA total of 57% of the respondents (n=184) scored above the cut-off of the HSCL-25, and 20% (n=63) scored above the cut-off of the CCQ Mental State. Of the 91 patients who indicated a need for psychosocial care, 79% (n=72) were identified by the HSCL-25 (≥39), 35% (n=32) by the CCQ Mental State (>2) and 41% (n=37) by the CCQ Total Score (≥3). Chi-square tests showed the differences between the HSCL-25 and the CCQ Mental state (χ2=9.41, p<.002) and between the HSCL-25 and the CCQ Total Score (χ2=12.47, p<.001) to be statistically significant. Out of the 184 patients who scored above the HSCL-25 cut-off, 61% (n=112) reported no need for psychosocial care and out of the 64 patients with a high score on the CCQ Mental State 49% (n=31) patients reported no need for psychosocial care.

Characteristics of patients with a perceived need for psychosocial carePatients with a need for psychosocial care were about five years younger than patients without a need for psychosocial care (t=4.48, p<.001). No differences were found with respect to sex, FEV1, FEV1%predicted, FEV1/FVC or medical comorbidities (Table 5.2).



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Table 5.1 Characteristics of respondents (n=323)

*calculated with the GLI 2012 calculator of the European Respiratory Society

Variable Mean±SD (%) Mean Z score*

Female Sex, n (%) 140 (43)

Age, y 65.4±9.4

FEV1, l 1.48±0.66 -3.0

FEV1,%pred 51±20

FEV1/FVC 0.48±0.16 -3.1

0 comorbid conditions, n (%) 159 (49)

1 comorbid condition, n (%) 106 (33)

≥2 comorbid conditions, n (%) 58 (18)

Cancer, n (%) 52 (16)

Heart disease, n (%) 48 (15)

Diabetes Mellitus, n (%) 31 (10)

Other comorbid conditions, n (%) 49 (15)

HSCL-25≥39, n (%) 184 (57)

CCQ Mental State˃2, n (%) 63 (20)

CCQ Total Score≥3, n (%) 91 (28)

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Figure 5.1 Flowchart of the inclusion

HSCL-25= Hopkins Symptom Checklist-25 CCQ=Clinical COPD Questionnaire

420 outpatients with COPD were invited to complete the screening questionnaire

323 (77%) completed the HSCL-25, CCQ and question on a need for psychosocial care

97 (23%) non-response Reasons: 47 unknown 20 declined participation 12 cancelled the appointment 7 did not identify themselves as having COPD 5 did not receive the questionnaire 2 did not complete the CCQ 4 did not answer the question on psychosocial care need



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Variable Need (N=91) No need (N=232) Significance

Female Sex, N (%) 44 (48%) 96 (41%) χ2=1.29, p=.26

Age, y 61.75±9.58 66.82±8.98 t=4.48, p<.001

FEV1, l 1.45±0.66 1.5±0.67 t=.46, p=.65

FEV1,%pred 54±25 54±21 t=.03, p=.98

FEV1/FVC 0.49±0.17 0.48±0.17 t=.11, p=.91

Comorbidities present, N (%) 39 (43%) 125 (54%) χ2=3.18, p=.08

Cancer, N (%) 12 (12%) 41 (18%) χ2=1.51, p=.22

Heart disease, N (%) 11 (12%) 37 (16%) χ2=.77, p=.38

Diabetes Mellitus, N (%) 6 (7%) 25 (11%) χ2=1.32, p=.25

Other comorbid conditions, N (%) 12 (12%) 37 (16%) χ2=.39, p=.53

HSCL-25≥39, N (%) 72 (79%) 112 (48%)

CCQ Mental State˃2, N (%) 32 (35%) 31 (13%)

CCQ Total score≥3, N (%) 37 (41%) 54 (23%)

Table 5.2 Characteristics of patients with a need for psychosocial care (unmet or met) vs. no need

Mean±SD

DiscussionIn line with our hypothesis, the HSCL-25 identified more patients with COPD in need for psychosocial care than the CCQ Mental State (and Total Score). A need for psychosocial care was indicated by almost a third of all patients and they were somewhat younger than patients without a need for psychosocial care. Contrary to expected, patients with a poor medical health, i.e. those with worse lung function and more comorbidities were not significantly more often in need of psychosocial care than those with relatively better medical health. Since the HSCL-25 was specifically designed to detect psychological distress, it is not surprising this instrument is better capable of detecting patients in need for psychosocial care than the CCQ subscale Mental State, which consists of only two questions. However, one fifth of the patients who reported a need for psychosocial care were not highly distressed (according

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to their score on the HSCL-25) and the majority of the highly distressed patients reported no need for psychosocial care. These findings indicate that, similar to what has been found in other chronically ill populations (Fleer et al., 2013; van Scheppingen et al., 2011), high psychological distress levels are not by definition related to a need for psychosocial care in COPD patients. The HSCL-25 and other distress instruments should therefore be treated with caution when it comes to their capabilities to screen which patients with COPD are in need for psychosocial care. Specific reasons for the presence/absence of a need for psychosocial care in highly distressed patients were not investigated in this study: future research should focus on mediators or moderators between distress questionnaires outcomes and need for psychosocial care. For instance, a low perception of symptoms or alexithymia (a difficulty in expressing psychological symptoms) might influence the expression of a need for psychosocial care (Tselebis et al., 2010). In Asthma literature, a relationship between alexithymia and the perception of symptoms is reported, as well as a relationship between alexithymia and coping styles (Amore et al., 2013). In this study, more than half of the patients with a need for psychosocial care were already receiving such treatment. Apparently, those patients find ways to meet psychosocial care needs within the Dutch healthcare system. However, under-treatment still occurs, as some patients with high distress levels do not express a need for psychosocial care, and therefore do not receive treatment. As indicated in the introduction of this article, consequences may be serious. Currently it is suggested to ask all patients with COPD to complete a self-report screening questionnaire (Ahmed, Kelshiker, & Jenner, 2007), but it would be potentially more cost-effective to specifically direct a screening procedure at those patients most likely to be in need of psychosocial care (Schane, Walter, Dinno, Covinsky, & Woodruff, 2008). However, a need for psychosocial care seems not to be related to objective illness variables; we found no statistical significant differences between patients with a need versus no need for psychosocial care, with respect to FEV1, FEV1% predicted or medical comorbidities. Possibly COPD patients with (more) medical comorbidities are not more likely to express a need for psychosocial care than patients without, or with less comorbidities because the burden of COPD in itself is already high, and having a comorbid disease does not add significantly to this burden, in terms of experiencing a need for psychosocial care. The only specific characteristic we found was that patients with a need for psychosocial care were younger, compared to patients with no need for care; a finding consistent with research in cancer patients (van Scheppingen et al., 2011). More research is needed to understand what characterizes the subgroup of patients with COPD and a need for psychosocial care or patients with COPD who report high psychological distress levels, but report no need for professional psychosocial care. Potentially, concrete stressful illness related events that have a major impact on daily life (such as hospitalization with an exacerbation) may create a need for psychosocial care. At the other hand, it may be that the urge to survive acute physical problems concerning COPD overrules eventual needs for psychosocial care. We suggest that future research on psychosocial care needs in patients with COPD monitors patients over a longer period of time and screens right after (illness related) stressful events have happened. Regarding our findings, the following should be taken into account. We relied on a single question in our questionnaire with regard to patients’ need for psychosocial care (‘would you like to talk to a healthcare provider about any potential problem you are experiencing?’), it may



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be that interviewing COPD patients on their need for psychosocial care would have led to more reliable results. The sensitivity of the question used needs to be formally tested, before it may be considered a ‘golden standard’. Furthermore, we did not assess anxiety and depressive symptoms separately. Possibly, a need for psychosocial care is different for patients with symptoms of an anxiety disorder compared to patients with a depressive disorder. Because of apparent reliability- and validity-problems with the cross-cultural use of the Hospital Anxiety and Depression Scale (Maters, Sanderman, Kim, & Coyne, 2013) (HADS; a questionnaire frequently used in COPD research), this well-known scale was not used in this study. We did not collect data on important clinical variables, such as exacerbations, in our retrospective study. In future prospective work data on clinical variables will be collected. Recently, the usage of new normal values and z-scores have been proposed and became more familiar (GLI-2012 (European Respiratory Society, 2017)), in particular with regard to FEV1/FVC as diagnostic criterion for COPD. In our sample of 323 subjects, roughly 10% of the patients had a z-score for FEV1/FVC > minus 2 and may therefore nowadays be classified as non-obstructive disease, such as chronic bronchitis or emphysema without obstruction. We compared the group with FEV1/FVC z-score < 2 with that with z score>= 2 and found no differences in age, sex and levels of distress. Therefore, we feel certain that the results in our sample apply to other outpatient populations of COPD.

ConclusionsThe HSCL-25 identified more patients with COPD who endorse a need for psychosocial care than the CCQ Mental State or Total Score did, and no relationship was found between a need for psychosocial care and objective illness variables or comorbidities. A substantial part of the patients with COPD reported a need for psychosocial care. Interestingly, about half of them already received such care. This study raises questions about the effectiveness of screening for distress in patients with COPD, as a means to identify patients in need for psychosocial care. Alternative ways to identify those patients should therefore be evaluated. However, distress measurements in patients with COPD should not be abandoned, for instance to investigate the influence of distress for a particular patient with COPD and treat distress if necessary.

Declaration of interestAll authors have no conflicts of interest to disclose. The work was funded by the Lung Foundation Netherlands. The sponsor had no role in the study design, data collection, data analysis, writing and reviewing of the manuscript.

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Long Alliantie Nederland (2016). Ziektelastmeter COPD: Functioneel ontwerp en specificaties. Retrieved from http://www.longalliantie.nl/files/6314/6830/9498/2016- 040_bijlage_1_Specificaties_Ziektelastmeter_COPD_2016-06-09.pdf.

Maters, G. A., Sanderman, R., Kim, A. Y., & Coyne, J. C. (2013). Problems in cross-cultural use of the hospital anxiety and depression scale: “No butterflies in the desert”. PloS One, 8(8), e70975. doi:10.1371/journal.pone.0070975.

Maurer, J., Rebbapragada, V., Borson, S., Goldstein, R., Kunik, M. E., Yohannes, A. M. ACCP Workshop Panel on Anxiety and Depression in COPD. (2008). Anxiety and depression in COPD: Current understanding, unanswered questions, and research needs. Chest, 134(4 Suppl), 43S-56S. doi:10.1378/chest.08-0342.

Obradovic, L. M., Pesut, D. P., Maric, D., Maskovic, J., Maric, N. P., & Milikic, M. M. (2012). Symptoms of anxiety and depression in patients with chronic obstructive pulmonary disease. Pneumologia (Bucharest, Romania), 61(2), 92-96.

Pincus, H. A. (2003). The future of behavioral health and primary care: Drowning in the mainstream or left on the bank? Psychosomatics, 44(1), 1-11. doi:10.1176/appi.psy.44.1.1.

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Schane, R. E., Walter, L. C., Dinno, A., Covinsky, K. E., & Woodruff, P. G. (2008). Prevalence and risk factors for depressive symptoms in persons with chronic obstructive pulmonary disease. Journal of General Internal Medicine, 23(11), 1757-1762. doi:10.1007/s11606-008- 0749-z.

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Tselebis, A., Kosmas, E., Bratis, D., Moussas, G., Karkanias, A., Ilias, I., Tzanakis, N. (2010). Prevalence of alexithymia and its association with anxiety and depression in a sample of Greek chronic obstructive pulmonary disease (COPD) outpatients. Annals of General Psychiatry, 9(1), 16.

Tsiligianni, I. G. Riemersma, R, Price, D, Kotz, D, Zakrisson, A. Schokker, S, Van Heijst, E, Van der Molen, T. Health status of COPD patients in clinical practice in three countries in europe. Am J Respir Crit Care Med 181;2010:A2855.

van der Molen, T., Willemse, B. W., Schokker, S., ten Hacken, N. H., Postma, D. S., & Juniper, E. F. (2003). Development, validity and responsiveness of the clinical COPD questionnaire. Health and Quality of Life Outcomes, 1(1), 13.

van Scheppingen, C., Schroevers, M. J., Smink, A., van der Linden, Y. M., Mul, V. E., Langendijk, J. A., Sanderman, R. (2011). Does screening for distress efficiently uncover meetable unmet needs in cancer patients? Psycho-Oncology, 20(6), 655-663. doi:10.1002/pon.1939.

Veijola, J., Jokelainen, J., Läksy, K., Kantojärvi, L., Kokkonen, P., Järvelin, M., & Joukamaa, M. (2003). The Hopkins symptom checklist-25 in screening DSM-III-R axis-I disorders. Nordic Journal of Psychiatry, 57(2), 119-123.

von Leupoldt, A., Fritzsche, A., Trueba, A. F., Meuret, A. E., & Ritz, T. (2012). Behavioral medicine approaches to chronic obstructive pulmonary disease. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine, 44(1), 52-65. doi:10.1007/s12160-012-9348-7; 10.1007/s12160-012-9348-7.

Yohannes, A. M., Willgoss, T. G., Baldwin, R. C., & Connolly, M. J. (2010). Depression and anxiety in chronic heart failure and chronic obstructive pulmonary disease: Prevalence, relevance, clinical implications and management principles. International Journal of Geriatric Psychiatry, 25(12), 1209-1221. doi:10.1002/gps.2463; 10.1002/gps.2463.

Yohannes, A. M., Baldwin, R. C., & Connolly, M. J. (2000). Mood disorders in elderly patients with chronic obstructive pulmonary disease. Reviews in Clinical Gerontology, 10(2), 193- 202. doi:10.1017/S0959259800002100.

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‘With the best of intentions’: why a psychological intervention study for patients with COPD failed to include enough patients

Chapter 6

Gemma A. Maters Robbert Sanderman

Johan B. Wempe Grieteke Pool

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Chapter 6

AbstractIntroductionA need for solid research into psychological interventions for patients with COPD urged us to design a semi structured cognitive experiential intervention, as part of a randomized controlled trial. Aware of problems encountered in earlier studies, we decided to pay extra attention to the way we approached patients, and patient’s willingness to participate. However, due to inclusion and dropout rates, we were not able to investigate the effectiveness of the intervention. Therefore, we reflect in this article on the process and problems encountered and offer recommendations for future studies.

MethodsHospitalized and outpatients at the University Medical Center Groningen and the Martini Hospital Groningen (The Netherlands) were approached by a research assistant to participate, between November 2008 and July 2011.

ResultsAlthough over 400 patients were approached, only 46 (57% of the interested patients) were randomized to the intervention condition (n= 25) or control condition (n=21). This number was far below the number needed (n=160) to examine the effectiveness of the intervention. Only 32% (n= 8) received the intervention as planned and 29% (n=6) dropped out in the control condition. The dropout rate for both conditions was 50%.

DiscussionDespite our ‘best intentions’ we were unable to include sufficient patients. Our experiences made us aware that there are many more aspects, patient perceptions and thresholds, than presumed beforehand. We recommend, in future intervention studies, patient participation in all stages of the research. Furthermore, we recommend addressing the level of knowledge and insight concerning the illness, the perceptions on physical and practical barriers, cognitions about psychosocial care and COPD care in general, illness denial, barriers to discuss psychological issues and self-conscious emotions.


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‘with the best of intentions’

IntroductionCurrently COPD is one of the diseases with a high and still increasing mortality rate, as well as considerable associated psychological, social and economic consequences (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). Additional psychological problems such as distress, anxiety or depressive symptoms, are reported substantially more often in patients than in ‘normal’ controls, respectively in 40% in patients with COPD versus 25% in controls (Panagioti, Scott, Blakemore, & Coventry, 2014). These psychological symptoms may, besides physical symptoms such as shortness of breath (dyspnea), negatively influence the so called ‘disease burden’ (Borges-Santos et al., 2015; Fan & Meek, 2014). Also, hospital admissions due to exacerbations of the illness may go together with stress and anxiety (Pooler & Beech, 2014). Therefore, several studies have examined the effects of psychological interventions, aimed to reduce distress levels in patients with COPD (Panagioti et al., 2014). Although, according to some studies, cognitive behavioral therapy may reduce anxiety and depressive symptoms, the reported treatment effects are small and the research designs are found to be of poor quality (Baraniak & Sheffield, 2011; Farver-Vestergaard, Jacobsen, & Zachariae, 2015; Smith, Sonego, Ketcheson, & Larson, 2014; Usmani et al., 2017). In addition, problems are reported concerning the inclusion of patients with COPD into interventions studies. For instance, Stoop et al (Stoop, Nefs, Pommer, Pop, & Pouwer, 2015) reported that less than 2% of screened patients (with diabetes, asthma or COPD) were actually included and randomized into an intervention study; they concluded this low inclusion rate may be due to a low perceived need for a psychological intervention. Interestingly, a review of Dowson et al (Dowson, Kuijer, & Mulder, 2004) shows that refusal rates are generally not reported in COPD intervention studies, whereas they are remarkably high in studies that do report the refusal rates. The authors suggest there is reluctance on the part of patients with COPD to become involved in psychological (intervention) studies. Maybe, due to the illness burden, patients are wary for every extra activity or effort. Taken together, there is a need for methodological proper research into the effect of psychological interventions, which however should be feasible in the daily practice of patients with COPD and should consider their personal perception on their life with this illness. To achieve this, we planned a short, semi-structured psychological intervention (6 up to 8 sessions), aimed at reducing psychological distress and dyspnea. The intervention considers cognitive, as well as emotional experiencing processes, together with attention for possible illness-related issues concerning the partner relationship. As we were aware of problems encountered in earlier studies, we decided to pay beforehand extra attention to the way we approached patients, as well as to patient’s willingness to participate in the intervention. Despite these considerations and efforts, we nonetheless encountered serious problems with the inclusion, as well as high dropout rates of patients during the intervention. Consequently, we do know much more about problems to be encountered concerning the implementation of an intervention study for patients with COPD. But at the other hand, based on our data, no conclusions can be drawn about the effectiveness of our cognitive-experiential intervention, due to low numbers of patients that could altogether be included. Therefore, the aim of this article is a) to report on the process and problems encountered during the planned intervention study and b) to offer recommendations for future psychological intervention studies, especially concerning patients with COPD.


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Methods and materialsParticipants and procedurePatients with COPD, hospitalized due to an exacerbation, as well as patients attending the outpatient clinic for Pulmonary Medicine of the University Medical Center Groningen (UMCG) and the Martini Hospital Groningen (MHG) in The Netherlands, were approached for inclusion in our planned intervention study between November 2008 and July 2011. Inclusion criteria were: a diagnosis of COPD stage 2-4, age between 40 and 80 years old, and expression of a need for psychosocial care on a questionnaire. Patients were excluded when (1) their life expectancy was less than a year, based on their medical records, (2) they were unable to fill out questionnaires, (3) they were diagnosed with a severe psychiatric disorder, or (4) they were already receiving treatment from a psychologist or psychiatrist. Because we were aware of the inclusion problems that other researchers encountered in intervention studies, we decided to approach all eligible patients personally by a trained research assistant. During their training, the research assistants were taught how to approach patients in a respectful, nonjudgmental and neutral way. They were explained that their task was not to persuade patients, but to identify and discuss illness-related psychological distress and a possible related need for psychosocial care. A research assistant approached eligible hospitalized patients at both UMCG and MHG within four days after the start of their hospitalization because of an exacerbation of COPD. In case a patient expressed a need for psychosocial care, he/she received a letter explaining the design and purpose of the study. After two days the research assistant visited the patient again, to ask if the patient agreed to participate in the study. When willing to participate, the patient signed an informed consent. The inclusion procedures were different for outpatients at the UMCG, respectively MHG, due to practical reasons:a. Eligible outpatients of the UMCG received a letter by post, explaining the design and purpose of the study, two weeks prior to a scheduled visit to the outpatient clinic. In the letter they were asked to answer a question concerning their need for professional psychosocial care (yes, maybe, no) and to fill out questionnaires (e.g. Hopkins Symptom Check List-25; HSCL-25 see measures). Two days prior to their visit patients received a phone call from the research assistant, in which she asked whether the patient agreed to have a conversation with her, right after the visit to the pulmonary physician. When the patient did agree, he/she was invited to hand over the questionnaires and to discuss the scores on the questionnaires. In case a patient indicated a need for psychosocial care, the study was further explained and the patient was invited to think about participation. After one week the research assistant approached the patient by phone, to hear if he/she was willing to participate in the intervention study. If so, the patient signed an informed consent.b. Eligible outpatients of the MHG were approached by a research assistant right after their scheduled visit to a pulmonary physician and they were invited for a conversation about the intervention study. They also were asked to fill out the HSCL-25. In case they indicated a need for psychosocial care, they were invited to participate in the planned intervention study and to sign the informed consent.

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After signing the informed consent, the participating patients were randomized by computer software to either the control group (no intervention) or to the psychological intervention group. Randomization was based on hospital, gender, age and their scores on HSCL-25 and Chronic Respiratory Questionnaire (CRQ; see measures).

MeasuresOriginally, we planned to use questionnaires in our intervention study meant to investigate the progress and overall effectiveness of the intervention. However, due to lack of data we only briefly describe the two main measures, that were used for randomisation and calculation of the clinically important difference.• The CRQ concerns a frequently used measure of health-related quality of life in chronic

respiratory disease and includes 4 subscales: dyspnea, fatigue, emotion and mastery (Schunemann et al., 2005).

• The HSCL-25 is a well-validated and frequently used psychological scale to assess anxiety and depressive symptoms (Derogatis, Lipman, & Rickels, 1973; Kleijn, Hovens, Rodenburg, & Rijnders, 1998).

Patients were asked to fill out questionnaires before the start of the intervention (T0 and T1), during the intervention (T2), directly after the last session (T3), and at 3 and 6 months after the last session (T4 and T5). Patients randomized to the control condition were asked to fill out questionnaires at equivalent moments.

Statistical analysesBeforehand, a statistical power analysis was performed in order to determine the number of patients needed to be able to evaluate the effectiveness of the intervention. Considering the clinically important difference of the CRQ-dyspnea domain (0.5) (Redelmeier, Guyatt, & Goldstein, 1996) as well as an expectation of 20% drop out, we would have needed n=160 patients to enroll in the study (n=80 in the intervention condition and n=80 in the control condition).

Treatment protocol; integrative cognitive and experiential therapyThe psychological intervention consisted of six to eight weekly sessions of 45 minutes. A combination of cognitive and person-centered experiential techniques was used. Trained psychologists provided the treatment, based on a detailed treatment protocol (Chapter 7). Well documented, process-experiential techniques (Elliott, Watson, Goldman, & Greenberg, 2004) were used in the first two sessions to enhance a positive therapeutic alliance (Bordin, 1979; Hafkenscheid, 2016), as well as to enhance the personal motivation of the patients concerning their personal treatment goals. In the sessions 3-6 (or 3-8), experiential techniques were used to promote (a) awareness of, and enhancement of coping with the physical symptoms and consequences of the disease, (b) awareness of, and enhancement of emotion-regulation and (c) awareness of, and enhancement of the role of social support, i.e. concerning the partner relationship. In these sessions cognitive techniques (Beck, 2013; Bögels & Van Oppen, 2015) were used to help patients recognize specific cognitions concerning duration, causes, consequences and control of the disease process. Also, experiential techniques were used to help patients recognize affects, and



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their implicit meaning in relation to their illness-perceptions (Angus, Watson, Elliott, Schneider, & Timulak, 2015; Elliott et al., 2004). Treatment goals were based on negotiation between the patient and the psychologist (Bordin, 1979; Safran & Muran, 2000). Concerning the role of social support, patients were proposed to invite their partners to join them at the second session. Furthermore, every patient in the intervention condition received a booklet containing explicit information concerning the intervention.

ResultsEnrollment into the studyIn total over 400 patients were approached at the UMCG (n=323) and MHG (n=± 180) (Figure 6.1). Of them, 81 patients showed interest to participate in the intervention study (UMCG n=35; MHG n=46); ultimately 63 patients (UMCG n=19; MHG n= 44) indicated they wanted to participate. Fourteen of these patients were excluded, due to exclusion criteria, and three patients decided after all not to participate in the intervention study (reasons unknown). So, at the end, only 46 patients (57% of the interested patients) could be randomized to either the intervention condition (n=25) or the control condition (n=21). These patients started participation (respectively the intervention plus questionnaires, or questionnaires only). The mean age of the participating patients was 64.3 years (SD±9.2, 57% females), 61% of them were involved in a partner relationship. Given the outcome of the power analysis, the number of patients that enrolled in our intervention study was far below the number we needed (n=160) to be able to determine the effectiveness of this intervention.

Dropout in the intervention and control conditionOf the 25 patients who were randomized to the intervention condition, only 32% (n= 8) received the intervention as planned (six-eight sessions; Figure 6.1). Of the patients that dropped out (68%, n=17), 5 patients received only one session, and 12 patients between two and six sessions, for several reasons, which all together is a too low number to perform statistics. Six patients turned out to have a psychosocial care need different from learning to cope with their COPD; they were offered a psychological treatment that met their need. Other patients indicated their medical condition hindered further adherence to the intervention, due to COPD, or of symptoms related to a medical comorbidity. Concerning the control condition, 29% (n=6) dropped out; we have no information concerning their reasons for dropout. The remaining n=15 patients of the control condition filled in the questionnaires, as planned. The dropout rate for both conditions (intervention and control condition) was 50% (n=23 out of n=46). Based on these low numbers of ultimate participants in both conditions we were, unfortunately, unable to perform statistical analyses concerning treatment effects, or concerning changes over time. Exploratory analyses show that patients who received the intervention as intended (n=8) had a mean HSCL-25 score of 43,6, meaning they were highly distressed (HSCL-25 score≥39). Patients allocated to the control group who filled out questionnaires (n=15) had a mean score of 43,6 (the exact same mean score as the patients who received the intervention). The CRQ-total mean score for the patients who received the intervention (n=8) was 3,4 compared to a mean CRQ-total score of 4,8 in the control group (n=15). The same trend in mean scores for the CRQ-

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dyspnea subscale was shown; 3,3 for the intervention group versus 4,8 in the control group. No cut-off scores are available for the CRQ, but a better CRQ score indicates better health and is seems the patients in the intervention group were physically more impaired.

DiscussionBeyond our intentions and efforts, as described above, to maximize the number of participating patients through a personalized approach, we did not succeed in including enough patients to be able to determine the effectiveness of the psychological intervention for patients with COPD under study. The costs (in time as well as money) to reach a number of only 46 randomized patients were considerable, but not enough to reach the power needed for statistical analysis (namely n=160 patients). Still, from exploratory analysis on T1 concerning both groups (controls and patients who received the intervention), we can conclude that the physical and psychological functioning of these patients was poor and justifies psychological care. However, on top of the problems concerning inclusion, we also experienced a high dropout rate, especially in the intervention condition. This has been found in earlier studies (Dowson, 2004; Stoop 2015), but remains puzzling and important for future research. In this discussion, we will first reflect on the possible causes for the inclusion and dropout problems and relate our issues to literature. Thereafter, we will discuss our recommendations for other researchers who intend to execute a psychological intervention study, especially in patients with COPD.

Inclusion problemsAlthough we have no bold data on reasons for declining to participate in this study, we know from personal conversations of our research assistants that physical and practical barriers were present in several patients who declined participation, such as already having many other appointments in the hospital or feeling too ill to travel. Also, unfamiliarity with psychosocial interventions, or the possible effects of those interventions played a role in patient’s decisions not to participate. Within this scope, the results of two pilot studies, which were performed in 2011 by psychology students at out department (Hendriks, 2011; Mayer, 2011), because our inclusion problems appeared irreversible, are illustrative. They conducted interviews with COPD outpatients about their need for psychosocial care, as well as their way of thinking about mood, anxiety and illness perceptions, related to the COPD. Of the n=17 interviewed patients (females n=8; mean age 67 years; semi-structured interviews), almost all, namely 15 patients reported not to experience a need for psychosocial care. The most frequently reported reasons were: a. not seeing the use of it, and b. experiencing their conversations with physicians, family and friends as sufficiently meeting their needs. Other results from the interviews show that the patients focused more on their physical complaints and less on psychological issues, although the majority experienced depressive and/or anxiety symptoms. Another factor at play seemed to be denial of the disease itself. Box 6.1 quotes a female patient and illustrates how denial works. What we learned from these post-hoc pilot studies is that, before starting an intervention study anyway, patients should be offered illness- and psychology related ‘education’, to make them more sensitive for the physical and psychological impact of their type of illness. This may seem contradictory: first raise insight and experiencing of illness burden, in order to be subsequently able to treat this



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burden. However, also in other medical conditions, patients need to learn about their illness and its impact, in order to promote proper health-related behavior. With respect to this, healthcare workers, such as physicians or specialized nurses should invite and validate patients to discuss physical as well as psychological complaints, and also should be alert on denial of the disease, when it occurs, in order to promote insight in, and consciousness of the impact of the illness. In this context, a publication by Wortz et al., concerning a study using qualitative interviews in 47 patients (female 47%, mean age 68 years) (Wortz et al., 2012) is worth mentioning: patients with COPD were interviewed about their goals, needs and expectations with regard to self-management. Three main themes were identified; fear, loss and a desire for improvement of care. Interestingly, this desire for improvement in care was related to a lack of knowledge about the disease itself, as well as ways to deal with the disease. So, recognizing this need for information concerning the illness and discuss the personal impact with patients, may motivate patients to accept illness-related psychological care and, eventually, lower the threshold to participate in a study. However, such a study should be very sensitive to the physical, psychological, social and practical problems that patients with (mild as well as severe) COPD encounter, in order to ‘fit’ to the total complexity of the patient’s situation, and not to overcharge the patients. With respect to this, Sohanpal et al. (Sohanpal, Steed, Mars, & Taylor, 2015) conducted a qualitative systematic review, concerning studies exploring reasons for COPD patients whether or not to participate in a pulmonary rehabilitation program (nine studies) and in self-management programs (one study). This review showed that non-attendance to support programs was influenced by the perceived symptom severity of patients, negative intervention representations (believing the program could/would not improve the condition/symptoms), lack of information or negativity about the program, concerns on physical/practical barriers and past experiences with support programs. Attendance was influenced by a self-help attitude, positive intervention representations (believing the program could improve the condition or symptoms), having received information or advice in favor of the program, not being concerned on physical/practical barriers and past experiences with support programs. Whether the outcomes of the study by Sohanpal et al. apply to psychological intervention studies in patients with COPD needs to be researched formally, but seems plausible. A study by Harrison et al. (Harrison, Robertson, Goldstein, & Brooks, 2017) investigated self-conscious emotions, which could act as barriers to psychosocial care. Self-conscious emotions are known to negatively impact on help seeking behavior and adherence to active interventions. They concluded that low levels of self-compassion, high self-judgment, and diminished self-worth exist more frequently in patients with COPD, compared to healthy controls of a similar age. In summary, these studies, which were published some years after we performed our intervention study, show that including patients for psychological intervention studies is more complex than we had expected and foreseen, despite our best intentions to take care of the personal situation and motivation of the patients. If we had known what we know now, we should have addressed, before we started inclusion for the intervention, the level of knowledge and insight concerning the illness, the perception and actuality of physical and practical barriers, cognitions about psychosocial care (or the benefits of it) and COPD care in general, levels of illness-denial and barriers to discuss psychological issues, as well as self-conscious emotions.

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Maybe, such a study is needed anyway before an intervention study can be planned. Still, it should be taken in mind that participation in a study generally takes more energy from the participants than just receiving psychosocial support. Therefore, also the intensity, frequency and method of gathering research related information needs attention. For example, the use of video and/or apps that not only serve the gathering of study data, but also serve the process of, and feedback for the client should be considered.

Dropout problemsBesides the fact that we could not include enough patients in the intervention to accomplish enough power to perform statistics, also the dropout rate within the intervention condition was high in our study (17 out of 25 patients, 68%). In a systematic review by Sohanpal et al. (Sohanpal, Hooper, Hames, Priebe, & Taylor, 2012) concerning COPD intervention studies, dropout rates of less than or equal to 30% were reported. Our dropout rate is substantially higher than the rates reported in this review. The reasons for dropout in our study were diverse, although the most prevalent reason appeared to be that patients withdraw their need for help after some sessions, or presented a need for help regarding another domain than their illness. Although these patients could continue their sessions as agreed, the intervention could not anymore be used on behalf of the study. In their review and meta-analysis Baraniak et al. (Baraniak & Sheffield, 2011) reported that more than half of the assigned participants dropped out in nine COPD intervention studies. Most of the reasons reported there, were similar to those reported in our study, e.g. medical reasons and time-constraints. Sohanpal et al (Sohanpal et al., 2015) reported the following factors to influence dropout in support programs (pulmonary rehabilitation and a self-management program): unmet expectations after attending a few sessions, perceived severity of symptoms, perceived physical/practical concerns related to attendance and no encouragement to continue with the program due to staying alone. The authors stress the importance of addressing illness/intervention beliefs, in order to improve participation in support programs. Also a study by Alexopoulos et al (Alexopoulos, Raue, Sirey, & Arean, 2008; Alexopoulos et al., 2013) addressed the need to tackle possible thresholds in interventions for COPD patients, in this case: patients with a comorbid depression. The thresholds concerned, for example, misconceptions about COPD and depression, misattribution of depressive symptoms, dissatisfaction with care and practical barriers. According to the study the intervention increased rehabilitation exercise and adherence to antidepressant medications, and decreased depressive symptoms and disability. In hindsight, we can conclude that we should have checked more explicitly with the eligible patients, before the start of the intervention, if the goals of the intervention were really clear to them and consistent with their needs. Even more however, we should, in the elaboration phase of the intervention, have used patient participation, to fine-tune aspects that influence participation and implementation. Nowadays, this is a prerequisite for the permission to perform a study like this in The Netherlands; we know now, for better and for worse, how crucial this is and wonder, looking back, why we were not enough aware at 2007 of this issue, that nowadays seems ‘stating the obvious’. Apparently, designing studies top-down was much more usual at the time, and patient participation in its infancy.



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RecommendationsBased on our experiences during the recruitment, enrollment and implementation of the intervention study, as well as the literature, we suggest that in future intervention studies researchers should, from the start, involve patient participation in all stages of the planning of the design. First of all, not only professionals, but especially the patients themselves, should grow in their sensitivity concerning the physical as well as the social and psychological impact of the illness -if they want to -, before any idea in the direction of ‘intervention’ will make sense to them. Behavior change, which is inherent and central to any psychological intervention, is a very tough process that will only be dealt with when patients experience the necessity and/or the benefits. A recent example concerning patient participation, prior to the development of a planned intervention, is a study from Metting et al. (Metting, van den Berg, van Heijst, Kocks, & van der Molen, 2016), where the opinions and preferences of patients with asthma or COPD were investigated, according to automatically providing them with their medical results. Concerning patients with COPD, it is crucial that not only healthcare workers and, eventually, researchers are able to empathize with patients, but also that patients are given the opportunity to make clear how far they can and want to go in facing the burden of their illness. This concerns ‘indication’: the ‘fit’ between a patient’s problems, needs and motivation, to participate in a treatment program. Furthermore, researchers have to be aware that patients with COPD may have a picture of the goals and contents of a psychological intervention, which is easily experienced as ‘another burden’. Therefore, interventions should offer, and bring, immediate relief form the viewpoint of these patients; for example, an intervention should ‘fit’ to the daily and long-term hassles and burden of the illness. For that, it is needed that the patient feels invited and motivated to look to these negative aspects. As a result, maybe sessions should be much shorter, e.g. 20 or 30 minutes instead of 45-minute sessions, and maybe not face-to-face, but blended care, with Skype, or home-visits. It is that simple: when an intervention (study) is not appealing enough to patients, and/or viewed as a new burden, they will not participate. Put in a broader perspective, we wonder if the RCT if the best way to study psychological interventions after all. In recent years there is a debate in literature about the RCT as the ‘golden standard’, especially regarding psychological interventions (Raad voor Volksgezondheid en Samenleving, 2017). We therefore recommend future researchers to think carefully about the design and process evaluation; does it really investigate what you’re interested in?

ConclusionsAlthough we designed an intervention, based on research concerning efficacy of the methods used (cognitive as well as person centered experiential therapy), we failed in including enough patients with COPD into our intervention study, despite our ‘best intentions’ to take care of several thresholds and to personalize the goals and the protocol. In the meantime, we have become aware that there are many more aspects, patient perceptions and thresholds, than we presumed in 2007. A psychological intervention design that addresses all of the phenomenological situation, such as illness-perception, consciousness of trebling issues, needs and motivation of patients with COPD, is a first step to the scientific aim to include sufficient numbers of patients and prevent dropouts.

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“I do not often pay attention to my disease, I think of it as few times as possible. Yes, only when I feel dyspnea, I need to sit down. If I would pay attention to it all the time, I think that would be unpleasant to experience. I just don’t do that. I just hide it, I don’t have it. I do have it, but I don’t want to know that I do. […] I overlook it, as if I don’t have it. That’s not always a good thing, of course. Some sort of denial. I think it has to do with my character, it’s who I am”.

Box 6.1 A female patient talking about denial



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Enrolled n=63 UMCG n=19 MHG n=44

Randomized n=46

Allocated to the intervention condition n=25 Received allocated intervention (≥6 sessions) n=8 Discontinued intervention (≥2 and <6 sessions) n=12 No shows n=1 Medical comorbidities made it unable to adhere/ made the intervention not applicable n=2 No need for help regarding coping with the COPD/a need for help in another domain n=4 Too busy (too many appointments at the hospital) n=2 Severe exacerbation n=1 Referral to rehabilitation center n=1 Illness of partner n=1 Did not receive the intervention (1 session) n=5 No shows n=1 Dislike of the intervention n=1 Medical comorbidities made it unable to adhere/ made the intervention not applicable n=1 No need for help regarding coping with the COPD/a need for help in another domain n=2

Allocated to the control condition n=21 Lost to follow up (did not fill out all questionnaires) n=6 Unknown n=2 Patient deceased n=1 Did not feel physically fit enough to fill out questionnaires n=2 Referral to rehabilitation center n=1

Excluded (n=14) Life expectancy was less than a year n=2, Unable to fill out questionnaires: n=4 Diagnosed with a severe psychiatric disorder n= 1 Already receiving treatment from a psychologist or psychiatrist n=7 Declined, on second thoughts (n=3) Reasons unknown

Approached at the UMCG outpatient clinic n=323 Need for psychosocial care n=91 High score HSCL-25 n=186 Approached at the MHG outpatient clinic n= ± 180 Approached at the UMCG clinic n=20 Approached at the MHG clinic n=31

Interested in participation n=81 UMCG n=35 MHG n=46

Figure 6.1 Flowchart of enrollments and dropouts

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Wortz, K., Cade, A., Menard, J. R., Lurie, S., Lykens, K., Bae, S., Coultas, D. (2012). A qualitative study of patients’ goals and expectations for self-management of COPD. Primary Care Respiratory Journal: Journal of the General Practice Airways Group, 21(4), 384-391. doi:10.4104/pcrj.2012.00070.

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Chapter 7

Gemma A. Maters Grieteke Pool

Johan B. Wempe Robbert Sanderman

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Contents

7.1. Introduction Background & rationale of the intervention Attention to non-specific therapeutic factors Design & inclusion

7.2. Manual for performing the intervention Session 1 Session 2 Session 3-5 Session 6/7 or if necessary 8 (follow-up and closure)

7.3. Procedure and process handling with regard to the treatment goals of the patient: physical, emotional and relational implications 7.3.1. Sub-goal ‘physical implications’ 7.3.2. Sub-goal ‘emotion regulation’ 7.3.3. Sub-goal ‘relational implications’

7.4. Evaluation of the intervention

Literature

Appendix 7.1. Rationale of the cognitive approach

Appendix 7.2. Rationale of the process-experiential approach

Appendix 7.3. Circle to outline social support

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7.1. IntroductionIn 2007 the ‘Longfonds’ (Lung Foundation Netherlands) granted a subsidy to the Department of Health Psychology of the Groningen University Medical Center (UMCG), concerning elaboration of coping-strategies in patients suffering from COPD (Sanderman,R., Wempe, J.B., Pool, G., 2007). Focus of the intervention study was the idea that, besides the inevitable physical burden of disease involved in COPD, patients with COPD may perhaps learn to develop more control over their physical, cognitive-emotional and psychosocial experiences and initiatives. The present intervention protocol specifically focuses on these three areas, while the limitations of COPD patients (such as shortness of breath, limited exertion time) were explicitly taken into account. The intervention described below is based on literature concerning psychosocial problems of patients with COPD, as well as on previous psychological intervention studies among patients with COPD. Uniformity in the offering of the intervention enables research into the effectiveness of the intervention. That is why the current intervention has been described extensively in the form of a manual, including information concerning objectives and activities per session, as well as three overarching sub-goals, namely: how to deal with the physical, emotional and relational implications of COPD. Furthermore, in order to be able to measure the effectiveness, the participating patients are asked to fill in a set of questionnaires, both before, during and after the intervention. In the next paragraph information is provided about the background, the rationale and the design of this cognitive-experiential intervention protocol for patients with COPD.

Background & rationale of the interventionThe current intervention protocol was developed for the benefit of patients with COPD, whose illness has progressed to the so-called ‘GOLD stage 2-4’ (Global Initiative for Chronic Obstructive Lung Disease (GOLD), 2018). In this stage of illness patients are usually under treatment of a pulmonary physician and/or are more or less regularly admitted into hospital because of an exacerbation (a strong revival of the disease). Hence, the burden of disease is currently quite strong for these patients. COPD is a lung disease of a progressive nature. Although the advancement of the disease as such cannot be stopped by psychological treatment, the coping of a patient with the disease affects the number/intensity of complaints and consequently the burden of disease. For example, a patient can learn to influence the intensity of his shortness of breath (dyspnea), at a specific moment (for example during an exacerbation), or on the long-term (Benke, Hamm, & Pane-Farre, 2017; Stoeckel, Esser, Gamer, Buchel, & von Leupoldt, 2018). Besides, a patient can learn how to affect the way he deals with the emotional and relational consequences of the disease (Wang, Wei, Li, & Li, 2017). Despite findings in the referred studies, we have the impression (based on literature, interviews with patients and conversations with other experienced psychologists) that COPD patients do experience very limited personal control over their opportunities to deal with disease-related problems, and as a result the disease unintentionally may be more burdening than strictly necessary (Dowson, Town, Frampton, & Mulder, 2004). The psychological intervention as described in this protocol intends to learn the patient recognize which personal influence he may have on coping with disease-related aspects, and at the same time how this influence can be exerted. The following sub-goals were formulated:



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a. Coping with physical implications/ symptoms of the disease b. Emotion regulation concerning the emotional reactions to/ perceptions of the disease c. Relational implications of the disease (concerning the relationship between the patient and his partner or other close ones)Within this psychological intervention a combination of cognitive techniques (influencing thought-patterns) and process-experiential techniques (influencing emotions, experiencing style and emotion regulation) is used; also, the role of the social context will be explored (experiencing help, communication). Our expectation is that both certain ineffective cognitions, as well as inadequate emotion regulation habits, may play an important part in the way COPD patients deal with this disease and the associated illness burden. Also, we expect that attention for both cognitive patterns as well as emotion regulation habits may have a positive effect on the patient’s motivation to be more aware of (the influence of ) his own illness-behavior, and consequently on his motivation to influence the personal illness-burden. In cognitive therapy the efficacy of the treatment is particularly attributed to the stimulation of changing habitual, inadequate thinking patterns (Beck & Geluk, 2011). In process-experiential therapy the focus is on experiencing and recognizing (the nature of ) emotions, in order to be able to regulate these emotions in a more productive, adaptive manner. In addition, in this type of treatment the role of a safe therapeutic alliance is articulated to facilitate the emergence, endurance and acceptance of strong (negative) emotions (Elliott, Watson, Goldman, & Greenberg, 2004). Also this latter type of therapy has been proved to be effective for various groups of patients (Emotion Focused Therapy, EFT, e.g. Elliott, 2013; Greenberg, 2017; Mlotek & Paivio, 2017; Timulak & McElvaney, 2016). Besides in the current study, EFT recently has been used in combination with cognitive therapy (Suveg et al., 2018). Interventions focusing on the social context, particularly on the possible partner relationship, pay attention to reciprocal communication-patterns and the type of (mutual) social support. Figure 7.1 offers a schematic representation of the dynamics of dyspnea (shortness of breath), one of the main aggravating symptoms of COPD, in relation to emotions, cognitions, behavior and relational/contextual aspects.

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Environment (partner)

Dyspnea

Inadequate emotion

regulation and irrational

cognitions

Avoidance of action

Breathing behaviour

Smoking behaviour

Overactivity

The body and the disease

Feelings of fear/ anxiety

Feelings of depression

Figure 7.1. Schematic representation of the reciprocal relation between intensity of dyspnea and some bio-psycho-social factors

For the fi rst sub-goal, infl uencing physical implications, we especially used techniques from cognitive therapy. Firstly, to list the patient’s knowledge and thoughts with regard to the disease as such, as well as to specifi c disease-related behavior of the patient, and concerning his contact with others. Secondly to explore possible alternative behaviors and thoughts. According to the principles of the cognitive therapy, the patient becomes aware of the role that certain thought-patterns can play in dealing with the burden of the chronic disease. In addition, he learns to examine and to recognize which thoughts are helpful and which ones are not, and how he can steer his thoughts in a more helping, adequate direction. In the current protocol the psychologist is free to determine when to use which specifi c technique from the cognitive therapy. For the second sub-goal, infl uencing emotion regulation, process-experiential techniques are used. In the fi rst two sessions of the treatment the creation of a good working alliance is specifi cally under attention (e.g. ‘how do you feel about talking here with me about your illness and the way you try to deal with it?’). This also appeals to the patient’s motivation to pay attention to his own part in the coping-process. In the subsequent sessions the patient is helped to become more aware of the type of emotions the disease evokes, what these emotions mean to him, the way he deals with these emotions and alternative ways of coping with these emotions (emotion regulation). The psychologist pays attention to a number of ‘relational principles’ (concerning



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the quality of the working relationship) and a number of ‘task principles’ (concerning working on negotiated tasks and goals see Table 7.1). With regard to working on the emotion regulation sub-goal the psychologist pays attention to the emergence of so-called markers (Elliott et al., 2004); this concerns (verbal or non-verbal) expressions of the patient that refer to an important (problematic) emotion, such as, for example, sighing or changing one’s tone and emotional facial expression. The psychologist subsequently responds with an intervention concerning this particular emotional event, in order to explore the underlying emotion and its meaning, and to encourage adequate emotion regulation. Working this way with emotions, it is important to realize that intense emotions in COPD patients can lead to serious shortness of breath. This can lead to exaggerated avoidance of emotion, or to an uncontrolled emotional outburst. That is why paying attention to emotion regulation, e.g. handling signs of emotion adequately, is generally important, but also during the sessions. For the third sub-goal, influencing the relational implications of the disease, we suggest (besides attention for the social context of the patient) the patient to invite his or her partner (if available) to attend session 2. Firstly, we expect the partner to play an important role in the way the patient deals with the disease in everyday life, like for instance by helping to look for medical or other needed assistance. Secondly, the partner has the opportunity to give his view on the home situation. Thirdly, we expect the presence or absence of certain forms of support to be of influence on the way the patient deals with the disease, and on the discomfort he experiences from it. In case a patient states that he does not want his partner to be present during the sessions or when a partner states that (s)he does not want to be present during the sessions, their wish will of course be respected.

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Type of principle Part Activities of the psychologist

Relationship principles: facilitate a safe and productive therapy relationship

Empathic attunement Let go of presumptions, enter the patient’s experience, resonate with the patient’s experience and select and grasp what appears to be important or central.

Therapeutic bond Express empathic attunement to patient through reflection and other responses; check accuracy with patient. Develop and express caring through acceptance, prizing and trust. Express presence through emotional contact with patient in a real relationship.

Task collaboration Develop goal agreement through identifying, understanding and supporting patient’s goals. Develop task agreement through experiential teaching and negotiation. Offer collaborative nonexpert tone.

Task principles: facilitate therapeutic work on specific therapeutic tasks.

Experiential progress Encourage particular microprocesses appropriate to current task.

Task completion and focus

Task orientation: listen for tasks, help patient identify key tasks. Gentle persistence: help patient stay on task and return after sidetracks. Flexibility: negotiate with when continue task vs. switch to a more important task.

Self-development Empathic selection: listen for and select growth-oriented experiences. Patient-empowerment stance: encourage patients to consider themselves to be expert of themselves.

Table 7.1. Some relational and goal principles according to the process-experiential approachElliott, et al., 2004, Learning Emotion-Focused Therapy



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Attention for non-specific therapeutic factorsBesides the use of elements from cognitive-behavioral and process-experiential therapy, the psychologist should be aware of non-specific factors; these factors have proved to influence therapy results (Elvins & Green, 2008; Trijsburg, 2003). A brief survey of these features is presented below. With regard to the therapist features, persuasiveness, warmth, empathy, commitment, directivity and an expert status have proven to be relevant (Trijsburg, 2003). Empathy for instance can be subdivided into appreciating the patient’s perspective, and empathize with the patient’s feelings and perceptions and his nonverbal behavior. An expert status (reliable professionalism) can be developed by training as well as experience of the psychologist (Norcross, 2002). Variables that influence the effect of treatment from the patient’s side are: motivation, trust, hope, a certain degree of esteem for the therapist as well as support from the environment (Trijsburg, 2003). For instance, a low level of social support can cause the patient to find it difficult to proceed the treatment; the presence of social support shows a positive correlation with profiting from treatment. Within the mutual working relationship between the therapist and the patient, the following variables are relevant: contact, interaction, relationship, harmony, and agreement about tasks, goals and appointments (Trijsburg, 2003).

Design & inclusionThe intervention consists of six to eight sessions of psychological treatment. The first five sessions take place weekly; the sixth session is planned two weeks after the fifth session. If at that moment there is still a need for a seventh and/or eighth session, this/these will in principle take place two weeks and about two months after the previous session respectively (for the time schedule see Table 7.2). The first two sessions with the psychologist can, if applicable in case of exacerbation, take place during hospitalization. The subsequent sessions are planned in the outpatients clinic. The patient is asked if the partner (if available) could be present during session 2. Concerning inclusion, patients with GOLD-class 2-4 can be invited for the intervention. In addition, there has to be a certain degree of psychological suffering, which contributes to motivation and adherence to the intervention-scheme. The protocol is not designed for people who:1. have a life expectancy of less than one year;2. are incapable of undergoing a short-term psychological treatment (e.g. if a patient is psychotic or suicidal).

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Table 7.2. Survey of sessions (Wknr = week number)

7.2. Manual for performing the interventionIn this chapter the session manual will be described (for health care psychologists, clinical psychologists, psychotherapists): how to operate from session to session. The planning of the subsequent sessions is described according to so-called ‘in-session goals’: goals particular to a specific session. We will indicate what the content of the session is, which methods are used to achieve a certain goal, and in what way we try to achieve these goals. In advance, a discussion with the patient takes place about the question how he would like to deal with the three overall sub-goals, which are: recognizing and organizing the personal influence on the physical, emotional and relational implications of the disease. This negotiation results in the individual treatment goals of the patient. In the next chapter we will explain how throughout the sessions these three overall sub-goals can be elaborated, and we will offer some examples. It is important for the patient to transpose these general sub-goals to personal treatment goals, to experience them as personal issues. In this intervention design, we do not promote homework for the patients, for two reasons: 1) from experienced psychologists, working with COPD patients, we learned that homework usually is too demanding and hardly ever made; 2) also, we assume that the patient, if motivated, spontaneously will pay attention to their personal issues. In the sessions patients can be invited to think through certain subjects or to experiment with alternative reactions or behaviors in between sessions, but they will be informed also that this is not mandatory.

Session 1Initial situationWhen a patient has signed an informed consent to participate in the current intervention study, his medical doctor or general practitioner may refer the patient to the research team, which assigns the patient to a trained participating psychologist. The psychologist receives the name, address, birth date and medical diagnosis as well as some other relevant data (like medical treatment until now, or current home situation). The first session is planned preferably within a week after the referral, and takes place at a location that is relatively easily to reach for the patient, given his physical condition.


Wknr 1

Wknr 2 Wknr 2/3 Wknr 3 Wknr 4 Wknr 5 Wknr 7 Wknr 9 Wknr 17

Session 1

Session 2

Hospital

discharge

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Session 4

Session 5

Session 6

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In-session goals Session 1Start with setting up the therapeutic relationship.Start an assessment of options for psychological treatment of this particular patient.Check if the patient has an understanding of the reason and goal of the intervention, the role of the psychologist, and the content of the presumed treatment agreement.Check whether it can be of value to invite the partner (if available) to be present at the second session.

Content and activities Session 1A good therapeutic relationship consists, from the patient’s side, of trust in the psychologist as well as an active contribution to the treatment goals. The psychologist contributes to the building of a good therapeutic relationship by adopting an attitude of safety, empathy and support during the talks. In the first session, the psychologist estimates the potentials of the starting working alliance between his patient and himself (see Table 7. 3 and Table 7.4.).The psychologist guides the conversation in a way that after the session an estimate can be made about the level of suffering and motivation of the patient, as well as the options to work, in a personalized way, on the general sub-goals (within the planned number of sessions). In the first meeting no particular intervention is intended yet: working on specific, personalized goals is part of later treatment sessions. In the first meeting the psychologist notices which personal treatment goals may touch the core of the problems. Invite the patient to talk about his situation, e.g. by asking:

how he feels he is doingwhich medical treatments he went through because of his lung disease, how often he has been admitted into hospital until now, what all this does to himwhat his life looks like nowadays, as far as relationships and (daily) activities are concernedwhich feelings he has, concerning his having a lung diseaseif he had earlier contacts with mental health professionals, such as a psychologist or a psychiatrist. If so: is it important to request information about this?

Make sure that the patient understands that the sessions are meant to explore if there are methods that would make it possible for him to influence the way he deals with his disease. Furthermore, make sure that he understands that the psychologist has a ‘coaching’ role. This means that the psychologist does not prescribe solutions, he just investigates, with the patient, which options there are in this specific case. Explain that the first meeting is chiefly of an exploratory nature, and that in the second meeting personal treatment goals will be at issue, which can be worked on in the forthcoming sessions. Check, with regard to the ‘informed consent’, that the patient knows that basically there will be at least six, and a maximum of eight sessions of 45 minutes. Participation is voluntary, which means that at any time the patient may decide to quit the intervention-process.

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Treatment stage Possible problems

Patient starts therapy.

Drop-out before first session.

Initiating a safe working environment.

Patient feels misunderstood, judged or unsafe. Patient regards therapist as insincere or untrustworthy. Patient perceives empathic attunement as a dangerous intrusion.

Locating a therapeutic focus.

A therapeutic focus is absent. Patient has difficulty finding and maintaining a focus. Patient is scattered or generally defers from therapist.

Establishment of an agreement on therapeutic foci or goals.

Patient is ambivalent about change. Patient is not firmly committed to working toward goals related to main therapeutic focus. Patient sees the causes of his/her problem differently from therapist.

Establishement of agreement on how to work toward therapeutic goals.

Patient has difficulty turning attention inward. Patient questions the purpose and value of engaging in therapy to deal with problems. Patient has expectations about tasks and process that diverge from those of therapist.

At the end of the first session, ask the patient how he looks at a next meeting and what he expects from it.Ask the patient if he would be willing to invite his partner (if available) for the second session. Explain to the patient that this invitation is meant to enable his partner to tell how he/she experiences the illness of the patient, and (if desired) add the message that this is the usual routine, while experience has shown this can be of help. If the patient indicates that he does not need or want his partner to be present at the second session, this will be respected.Set a date and time for the next session, at about one week after the first session.At the end of this first session, write a summary of the issues that were talked about andreport emotional aspects you have noticed.

Table 7.3. Creating the therapeutic relationshipElliott et al., 2004, Learning Emotion-Focused therapy


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Step 1

Confrontation difficulties; acknowledge complaint. Withdrawal difficulties: gently and tactfully raise possibility of difficulty to see is patient recognizes it as a difficulty as well.

Step 2

Suggest to patient that it is important to discuss the difficulty, including each person’s part in it. Present the difficulty as a shared responsibility to work on together. Patient and therapist begin by stating their views of what happened.

Step 3

Encourage patient exploration of possible solutions; ask what patient needs. Offer possible changes in own conduct of therapy.

Table 7.4. Dealing with difficulties in the therapeutic relationship Elliott et al., 2004, Learning Emotion-Focused Therapy

Session 2In-session goals Session 2

Continuation of establishment of a proper therapeutic alliance (see Session 1).Continuation of listing patient’s problems, complaints and important issues (see Session 1).Listing of personalized treatment goals and discussing the way to work on these goals.If at issue (when partner present): conversation with the couple, to obtain supplementaryinformation about the home situation and types of (reciprocal) social support.

Content and activities Session 2Ask the patient how he has been doing recently.Ask the patient how he experienced the previous meeting.Make clear that this second meeting is meant to collect additional information at session one, and to discuss what could be the personal issues and goals for the next four to six meetings.As a continuation to the first session, ask the patient which (behavioral/practical, emotional, social) problems he encounters as a result of the physical symptoms of his lung disease. Try to make a connection to the general sub-goals (relate these subjects to issues that revealed in the first meeting).If at issue: Ask the partner how (s)he thinks the patient is doing. Ask the partner about his/her view, the impact of the patient’s limitations in everyday life at home, the emotional consequences for the patient and to what extent the patient receives social support.Invite the patient, during the conversation, to write down notes concerning his personal treatment goals on a card (offer card and pencil). At the end, three goals can be selected; less is no problem; more than three goals is not workable, given the number of intended sessions and the choosing of an overarching focus. Discuss with the patient in which order the goals are to be dealt with during the intervention-process. Consider for yourself, which goal could be worked on (and eventually reached) soon.

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Session 3 - 5In-session goals Session 3-5

Monitoring and maintaining a good therapeutic alliance (continuation sessions 1 and 2,applies to all forthcoming sessions).Working on the specified treatment goals as agreed in session two (applies to allforthcoming sessions).

Content and activities Session 3-5At the beginning of session 3 reflect on the current ideas of the patient concerning the treatment goals that were discussed in the second session. Emphasize that you would like to hear from the patient, in case he might develop any doubts about the goals and procedure, so this can be clearly and freely discussed.Monitor the quality of the working alliance and be aware of any problems or ruptures within the relational process. Possible problems that might occur are listed in Table 7.3. If problems occur in the working alliance, please react to them according to the procedures as described in Table 7.4.Check how the patient actively works on the goals that have been agreed, for example by asking how he feels end/or is doing with regard to a particular treatment goal. Monitor if there is any sign of commitment and progression, concerning the agreed treatment goals; always confirm and validate progression.At the end of every session ask the patient:1. In this session, did anything happen that was important or helpful to you?If so, what was it about? (explore)2. In this session, was there anything important or helpful to you, in the way we explored or discussed issues, so ... in our contact? If so, what was it about? (explore)3. In this session, did anything happen between us that was negative or hindering to you?If so, what was it about? (explore)At the end of every session ask the patient: to point to what is most important to ‘take away’ from this session.

Session 6/7/8 (follow-up and closure) Goals session 6/7/8

Evaluation of the prior sessions, referring to previously stated goals, in an informal,conversational way; take care that the patient feels ‘at home’ with his own issues.Reflection on the near and further future of the patient.Ending therapy: conscientiously saying goodbye to the patient: what does it mean,concerning this particular patient, to take leave?


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Content and activities Session 6/7/8Return to treatment goals: reflect, together, on the experiences of the patient, with regard to the content and depth of the conversations, concerning his core issues (content) and the way he explored alternative ways to cope with cognitive and/or emotional patterns (process). Ask the patient about his experience of the sessions: what was most worthwhile. List the issues or moments that were important to the patient.Enabling the patient to reflect on his near and/or further future. Encourage paying special attention to ‘elements’ of the conversations that the patient would like to take to the future.Saying goodbye to each other, in such a way that the patient – if possible - leaves with a satisfied feeling on this personal process after the last session. Encourage exchange of how the patient experiences the finishing of this intervention-process and how he feels about saying goodbye.

7.3. Procedure and process handling with regard to the treatment goals of the patient: physical, emotional and relational implications

7.3.1. Sub-goal ‘physical implications’Sub-goal: the patient recognizes that the burdening level of specific physical symptoms can be (at least partially) influenced by himself; he explores and recognizes in what way he can take a certain level of control.

Content and activitiesThe opportunities for personal control of the patient with regard to some physical symptoms of the disease consists of regulating breathing behavior and physical activity (too excessive or too little). The patient learns to recognize to what extent he can recognize and control the degree of dyspnea and his exertion capacity. During the first and second session the psychologist already got an impression of the patient’s cognitions and emotions with regard to the physical implications and symptoms he deals with. Subsequently, the psychologist continues to list these disease-related cognitions and emotions with the patient in one or more sessions. Most important regarding this issue is the degree of personal control. Especially cognitive interventions are applied here.

First give information about the issue of ‘illness-related cognitions’, for which the text of Appendix 1 can be used.After explaining the role that thoughts (cognition-patterns) play, list together with the patient a number of his illness-related cognitions by asking about the cause of the disease, the occurrence of physical symptoms that are caused by the disease (identity of symptoms), their progression, the implications of those symptoms for the patient and the personal control he presumes to have on the symptoms and implications (illness representations, see Leventhal et al., 2016; Achstetter et al., 2016; Pool, 2010). Relate these issues to some of the contents of session 1 and 2. After this, assess together with the patient the way in which ‘irrational illness -cognitions’ can have a negative effect on the way the patient deals with the disease. See Box 7.5 for some examples of illness-cognitions of patients suffering from COPD.

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Concerning the cause of the disease: ‘My illness was caused by difficulties with my husband and my son’.

Concerning the identity of the disease: ‘My lung disease caused my bellyache’.

Concerning the implications of the disease: “I do not want to be ill, I want to smoke and have my drinks”. “I am

unable to do anything.”. “I have no quality of life”.

Concerning the progression of the disease: ‘If my disease gets worse, it must be cancer’. ‘Maybe my illness

will soon be over since I am in hospital now’.

Concerning the degree of personal control of the disease: ‘You can’t control it in any way, it’s just a fact of

life’. ‘It’s useless trying to do something about it yourself, it would be a waste of energy’.

Then, use a cognitive technique (‘challenge thoughts’) to check with the patient whether the illness cognitions that were judged as ‘not helpful’ are valid or non-valid. The focus should be here on cognitions that concern the degree of the (lack of the) patient’s personal control on the symptoms-level and consequent physical implications. The cognitions of the patients with regard to the cause, identity, implications and progression of the disease can obviously be of influence on, or be connected to, the cognitions of the patient with regard to the degree of personal control. According to the psychologist’s judgement, he should determine which cognitive techniques he wants to apply at which moment in the session, to explore with the patient to what extent and in which way the patient can exercise more control on physical symptoms and other implications. For this, use Table 7.6 which shows a number of cognitive techniques, as well as examples of the application of these techniques.If, after the ‘challenging’ of the cognitions, the patient basically expresses signs of being able to achieve influence, encourage him to actively practice this ability to influence. Be attentive to (paradoxical) problems that might arise by him doing so, both in a practical and an emotional sense.

Table 7.5 Examples of illness-representations of COPD patients Leventhal et al., 2016


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Type Procedure

Listing of evidence This is to outline which evidence supports the thought and which evidence contradicts it. Besides, the

psychologist can ask about alternative interpretations.

Socratic dialogue The systematic asking of (open) questions, which will make the patient aware of the occurrence of automatic

thoughts and dysfunctional assumptions. Besides, more rational thoughts can be put into words. Many

socratic questions begin with: what, when, how, where, which and how many.

Gathering

information

This means that the patient will gather objective knowledge, which will enable him to investigate the

legitimacy of certain thoughts.

Behavioural

experiment

In the behavioural experiment data is collected about empiric support for a certain view. Prognoses are

compared to the results of the experiment. An important principle is that experiments cannot fail, because

they always produce information. If you choose to apply the experiment in the treatment, make sure it does

not become an assignment, for this is not consistent with the agreement that patients will not get any

homework, as described earlier. If you deem it advisable that a patient would try something out in everyday

life, then let him know in an informal way. For example, put it like ‘maybe you would like to try this’ or

‘just see if at any moment you might feel like trying this out’.

Pie chart technique The patient is encouraged, for example, to assign a proportional part of a ‘pie’ to all factors that are (were) of

influence on the beginning and progression of the disease. This technique can also be used to help the patient

to set targets. In that case two pies are used: one for the ideal situation and one for the actual situation.

Cost-benefit analysis First two columns are made, one for the advantages (benefits) and one for the disadvantages (costs). First the

advantages are listed, then the disadvantages. The patient can assign values to the advantages as well as the

disadvantages.

Worst case scenario Automatic thoughts are not challenged directly, but the patient’s ideas about everything that might happen

will be analyzed. The objective is the patient’s realization of what could be the greatest disaster that could

happen and of his realization of his own exaggeration.

Role play In the psychological treatment the role play can be used to come to new interpretations or to practice specific

skills. As far as social situations are concerned, the patient can first play himself and then the other person,

which makes it possible to track certain thoughts.

Table 7.6. Examples of cognitive techniquesBeck & Geluk, 2011, Bögels & Van Oppen, 2015

Examples of ‘physical implications’Below some examples are listed of situations that can be influenced by the patient.

Example 1. Recognizing warning signalsCOPD patients can experience ‘warning signals’ at the moment their disease deteriorates (exacerbation). Examples of these warning signals are increasing fatigue, a reluctance to engage in certain activities, such as walking up the stairs. However, many patients are not aware of the

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existence these warning signals and do not recognize the signals. When the patient starts to recognize the existence of warning signals, as a result of the conversations with the psychologist, he can visit his GP in proper time, or take action otherwise and thereby possibly prevent exacerbation and hospitalization. Cognitive techniques that may be of help for patients to gain insight in the meaning of ‘warning signals’ are: the Socratic dialogue, collecting information. On the other hand, some patients will pay too much attention to their physical sensations. These patients can be helped to find a middle way between ignoring and lingering over physical complaints.

Example 2. Recognizing provoking circumstancesSome COPD patients are sensitive to specific stimuli. For example, they respond with a sudden or sometimes delayed shortness of breath to cigarette smoke, perfume, cleaning products, humid or dry weather, or temperature differences. In some specific situations these stimuli may occur, e.g. in a company of smokers or in shopping areas. Especially COPD patients who recently were diagnosed with the disease, often have no knowledge about such breath-trebling provoking circumstances and of the idea that it could be helpful to avoid these contexts. Cognitive techniques appropriate to make the patient aware of ‘provokers’, and how to avoid them are: the Socratic dialogue, behavioral experiment, cost-benefit analysis, collecting information, the ‘pie chart technique’.

Example 3. Recognizing boundariesSome COPD patients try to keep functioning at a certain (high) level, despite their physical problems. Often COPD shows an erratic and progressive course, which means that physical complaints can vary daily or weekly, and may exaggerate. Maybe the patient does not recognize the changing or progressive course, or maybe he has cognitions about a ‘obligatory’ minimal level of functioning that is higher than he is actually able to manage. The psychologist can assist the patient to recognize if a changing and/or progressive course is indeed occurring, and try to identify barriers and/or find ways to adjust the level of activities accordingly. Cognitive techniques appropriate in this case: cost-benefit analysis, Socratic dialogue, collecting information, behavioral experiments.

Example 4. Recognizing the role of breathing behaviorThe way of breathing can affect the level of the experienced dyspnea (shortness of breath) for a patient with COPD. The psychologist can point to this aspect and ask what the patient knows about exercises, or encourage the patient to seek help for exercises (e.g. from a physiotherapist); or to explore alternatives in breathing behavior. Techniques that may help to make patients more aware of the role of their breathing behavior and their own options for more control are: collecting information, behavioral-experiential experiments, Socratic dialogue about the vicarious circle of anxiety and breathing-habits.

Example 5. Recognizing the role of relaxationRelaxation exercises have a positive effect on the level of dyspnea for COPD-patients with



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Use cognitive techniques in order to:

1. List illness-related cognitions 2. Outline the patient’s influence on the symptoms and physical implications 3. Encourage the patient to put his personal control into practice

dyspnea. Trying to relax during activities may have a positive effect, for instance because this can reduce feelings of anxiety and produce calm and slow breathing. It is important that COPD patients learn to recognize the effect of relaxation. Cognitive techniques appropriate to be used: collecting information about the role of relaxation and the opportunities for exercising, Socratic dialogue about the connection between dyspnea and relaxation, behavioral experiments, the pie chart technique. In case a patient expresses a need to learn a relaxation exercise, the psychologist can teach him the progressive relaxation method of Jacobson.

Table 7.7. Summary of activities for the sub-goal ‘physical implications’

7.3.2. Sub-goal ‘emotion regulation’Making the patient aware of the emotions evoked by the (stage of ) disease and the way he copes with these emotions. Explore how, or encourage how the patient can express and deal with these emotions in an adequate way.

Content and activitiesDealing with illness-related emotions means that the patient experiences emotions caused by the actuality of the disease, recognizes these emotions as illness-related troubles and is able to reflect and/or communicate about them, e.g. in imaginations, thoughts, words, or other (self-) communicative expressions This reflective process helps to learn to regulate emotions in an adequate way. During the first two sessions the psychologist already has got an impression about the way the patient deals with emotions. During the subsequent sessions the psychologist can continue to survey how the patient deals with his emotions. The patient may be assisted to utilize he meaning of emotions in an adequate way, for example as follows:

Give information about the informative impact of emotions. For this, one can useAppendix 2. After discussing the general role of emotions, discuss with the patient the idea that the process of a lung disease goes hand in hand with emotional processes. Use examples, statements or nonverbal signs of the patient to validate this idea. Validate anyway here-now emotions of the patient, during the conversation. Then discuss which important core emotion may be worth further exploration in the session. For this, use Table 7.8. It is important that the patient understands that several kinds of feelings are a quite normal response to having this particular disease, and also: that the way the patient deals with these feelings can make a difference for the coping-process.

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Markers Response of the psychologist Goal of the response

The patient expresses anxiety, anger, sadness, sorrow or another emotion (now or in the past).

1.

Options: The psychologist confirms and validates the emotion. The psychologist asks about experience of the emotion in the here and now.

The patient recognizes (the occurrence of) the emotion. During the session the patient experiences the emotion somehow.

The patient experiences anxiety or another emotion and expresses this nonverbally (perceptible for the psychologist).

Options: The psychologist asks about the presence of an emotion. The psychologist expresses observations. a.

The patient recognizes the emotion and puts it into words.

No marker of emotion, although it was to be expected.

The psychologist asks patient about the presence of any emotion.

The patient does recognize the emotion after all and says something about himself suppressing it.

The patient expresses vague emotions, like: ‘something isn’t right’.

The psychologist encourages patient to find a word or an image that expresses the feeling appropriately.

The patient searches for the essence of the emotion and puts this process into words.

Before going into the nature and importance of a specific emotion any further, talk about the shortness of breath at that very here-now moment and about a possible influence of the actual conversation on this. One can first use a relaxation exercise and exchange whether/how to continue this communication about current emotions (try to actualize the her-and-now process). Always be alert to any deterioration to the patient’s breathing during the session and pay adequate attention to this feature.

Table 7.8 Examples of markers and corresponding interventions by the psychologistElliott et al., 2004

Examples of ‘emotion regulation’A survey of frequent emerging emotions of COPD patients, as well as corresponding samples of discussions during psychological treatments in which process-experiential techniques were applied, is given below.

Example 1. AnxietyPatients with COPD may experience a lot of anxiety: the continuing experience of not getting enough air can be very frightening, physically as well as emotionally. It can cause patients to panic or to be afraid of swallowing. Although hardly ever COPD is fatal, patients do not know


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about this: even with little air most of the time a patient will not suffocate, with exception of some COPD patients in a terminal stage. For some patients the fear of suffocating is worse than the disease itself, and this expectancy itself may worsen the patient’s condition. In addition, COPD patients can be afraid of the future, and fear a (realistic) deterioration of the disease. Some patients hardly or not at all express their feelings of anxiety, e.g. because such expressions/conversations make them short of breath, or because the environment reacts negatively to such expression. For a COPD patient it can be a relief to discover that he has a certain control over the way he experiences and expresses his feelings of anxiety (emotion regulation).Part of a discussion:Patient: ‘I have no idea what my future looks like. I have decided not to think about it, it is too scary.’ The patient looks away and for a while keeps staring outside (marker 2 in Table 7.8).Response of the psychologist according to option a: ‘So what do you feel, thinking about the future?’Patient: ‘I am afraid’ (marker 1 in Table 7.8).Response of the psychologist according to option b: ‘I notice that you look away while are saying this ... I wonder, looking at you: how does it touch you?’Patient: ‘Yes, my future is so uncertain ...’Response of the psychologist according to option a: ‘What feeling does it evoke in you, your uncertain future?’Patient: ‘It scares me’ (marker 1 in Table 7.8).Response of the psychologist according to option b: ’What is the message of your face looking away, what is this movement saying here?’

Example 2. SadnessSadness is another regular emotional state among patients suffering from COPD. It can be caused by feeling of loss and be connected to uncertainty and powerlessness. Especially during hospitalization patients can feel uncertain, powerless and dependent. Also here it can be helpful that patients learn to recognize and accept these feelings as normal responses to having this type of illness, to validate them and teach them how to deal with these feelings in an adequate way. Part of a discussion:Psychologist: ‘Did the disease at any moment evoke emotions in you, recently or earlier?’ Patient: ‘For months everything can be okay, but then sometimes things are not going too well’ (marker 4 in Table 7.8).Response of the psychologist: ‘Can you tell what you exactly mean by ‘sometimes things are not going too well’?’Patient: ‘I’m going through a bad patch then.Response of the psychologist (showing empathy): ‘How does it feel, going through a bad patch?’ Patient: ‘Like everything feels bad then.’Response of the psychologist: ‘Hmm (validates) ... and how do you feel right now?’

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Example 3. AngerPatients can have feelings of fury or anger when confronted with limitations the disease imposes on them, or when they realize that some limitations are irreversible. Anger, too, can be a feeling that patients have not or hardly learned to express adequately.Part of a discussion:Patient: ‘Every time I have ‘to take prednisone, I get angry’ (marker 1 in Table 7.8).Response of the psychologist according to option a: ‘Seems very frustrating to you?’ Patient: ‘Yes, and especially so because apparently my body lets me down again.’ Psychologist: ‘How do you deal with this anger?’Patient: ‘I just try to get rid of it, to think of other things, otherwise I would only feel worse.’ Psychologist: ‘How does it feel, not to express your anger?Patient: ‘Well, yes ... it’s hard, I feel tense.’Psychologist: ‘What do you need, maybe, when you are that angry?’Patient: ‘That’s a difficult question ... actually... maybe I would like to throw out my anger ... but I don’t dear to, because I think this would make me feel worse, or more tired ... ‘ Psychologist: ‘So this is a kind of dilemma for you, a sensitive issue ...’

Example 4. SorrowSorrow can, in some cases, be considered, and validated as a mourning reaction: COPD patients sometimes experience/undergo a lot of losses, in different areas (e.g. body, self-esteem, work, hobbies, social contacts). It can be helpful if the patient realizes that feelings of mourning are an expression of the more or less concrete losses he undergoes and of the subsequent feelings; that this is quite normal considering the situation. Sorrow can go together with several emotions, and also with feeling down, tired and/or alone. It is important to recognize these feelings, this may help relax and to be able keep moving on.Part of a discussion:Patient: ‘Sometimes I feel like everything is lost and and my future is empty – what has remained of me?’Psychologist: ’Sounds like a kind of weeping, mourning ... when you say ‘what has remained of me’?Patient: ‘Comes very close to me, when I hear you say that, but ...... it feels like that, I’m sorry’Psychologist: ‘I imagine in such situation one needs kind of comfort or solace .... What do you may be need most now?’Patient: ‘I never think about myself that way .... Maybe being respected, still of worth – (emotional) I really doubt that...’



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First make sure the patient is able to respond adequately to an attack of dyspnoea, might this occur during the session. Then apply process-experiential techniques in order to:

1. list what the emotional implications of the disease are 2. discuss how the patient deals with these emotions 3. encourage the patient to handle and use these emotions in an adaptive way

Table 7.9. Summary of activities, sub-goal ‘emotion regulation’

7.3.3. Sub-goal ‘relational implications’Listing the relational implications of the disease as experienced by the patient and, if necessary, reflecting on ways to get or exchange more adequate social support.

Content and activitiesAdequate social support consists of behavior and verbal contact by people living close to the patient (including the partner), which are experienced as helpful and supporting by the patient. The degree and quality of the experienced support is outlined by discussing these issues with the patient and, if present, his partner. If the support appears to be inadequate (e.g. too little/ too much concern), psychologist and patient, possibly together with the partner, discuss which options there are to change this and how the patient himself could operate in this. Especially cognitive techniques are applied here.

Start by making an inventory of the patient’s social network. Make sure you know whom the most important supporting people in the patient’s life are (maybe note names). Ask the patient to indicate in a drawing where these important supporting people are positioned in relation to himself, on a form intended for this purpose (Appendix 3). Remember: the closer the patient puts someone to the middle of the circle, the closer he considers this person to be to himself. Ask the patient to explain why he puts specific people on a certain spot in the circle.If the partner is also present, ask her/him what it means to, or evokes in her/him that her/his partner has this disease and how (s)he (the partner) deals with that. If the partner has been present at the second meeting too, try to connect to the subjects, thoughts and feelings of that meeting in this context as much as possible.If the patient appears to feel displeased or uneasy with the kind of support he gets, ask him what he wants, and how in his view this could be achieved. Be alert then to possible irrational cognitions.If the rationale of the cognitive approach not yet has been discussed in earlier sessions, than discuss this now with the patient, using Appendix 1. Determine which cognitive techniques you want to use, at what moment, to examine with the patient to what degree and in which way he can influence the support he gets. For this you can use Table 7.6, which shows some cognitive techniques as well as examples of the application of these techniques.

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Examples of ‘relational implications’Some relational issues occur regularly in the context of COPD patients. Below a survey of these issues is listed, including some methods the patient may be can use to get control. Also, some statements are presented, as examples of how relational issues may be experienced or perceived by patients with COPD.

Example 1. The relationship with the partnerA disease like COPD can have a great impact on the relationship with the partner. For example: couples are restricted in undertaking activities together; their division of roles and their sexual relationship sometimes changes, or gets skew. Sometimes the communication about the disease as such and the consequences of it breaks down, and sometimes partners work hard to invest in providing support, but in an inadequate way. By learning how to be open and sincere about his condition, by reflecting on what kind of support would be helpful to him, and by exploration of how to express this in an adequate way, the patient may develop imaginations and idea’s on how to influence the support he needs from his partner (and/or other people close to him). Cognitive techniques can be used by the psychologist to make the patient aware of these issues, and to challenge irrational cognitions; e.g. Socratic dialogue, behavioral experiments, the ‘worst case’ scenario, cost-benefit analysis, and roleplaying.

Example 2. The relationship with other relatives, and friendsIn their relationship with relatives and friends COPD patients can experience difficulties too. They may be surrendered to limitations and difficulties, where it concerns visiting friends or relatives, because of their symptoms, or because of negative stimuli like smoke or baking odors. Moreover, COPD patients frequently have to cancel appointments, as their situation has changed. Sometimes they have difficulty in being assertive (for example, to be disappointing, unreliable, or worthless), whereas having this disease sometimes needs them to be assertive. Also, they often experience misunderstanding, or loose social contacts while their input in conversations gets more and more restricted. If so, it is important to list such consequences and to validate the current attempts of the patient to deal with these issues; but also, to reflect on the adequacy of the current thoughts, feelings and behavior and discuss alternatives, for instance by being sincere and accepting about the nature of his condition, and by letting other people know about this and what is helpful and what is not. The cognitive techniques mentioned at example 1 can be used here too.

Statements of COPD patients on relational implications‘I am seriously ill, and they should show consideration for me ... but my relatives, friends and acquaintances do not always understand this, because I still look pretty healthy.’‘Also, I have to make choices whenever there is a party, or a wedding. I need to consider pros and cons then, such as: is it worthwhile to go and as a consequence to spend a full night coughing? But sometimes people don’t take no for an answer, and then I do go...with a lonely feeling’‘Shortly after my diagnosis relatives and friends did ask me how I was doing, but they stopped doing so a long time ago, always the same story... Sometimes that’s hard for me. It feels like they are not interested in me anymore.’



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Use cognitive techniques in order to:

1. Outline the type and degree of social support 2. Provide insight into the efficacy and efficiency of this social support 3. Develop skills to communicate about, and receive adequate social support

‘The past seven years I went through a lot.Some people in my surroundings didn’t believe there was really anything wrong with me; sometimes they even challenged me. That feels brutal and humiliating...’‘My computer stands for me as the connection to the outside world; it’s impossible to imagine my life without it, I would be lost.’

Table 7.10 Summary of activities for the sub-goal ‘relational implications’

7.4. Evaluation of the interventionThere are several options for the evaluation of the intervention process: clinical evaluation per session, evaluation by means of previously defined outcome measures, and process evaluation. In this chapter we describe these evaluation methods.

7.4.1. Clinical evaluation per sessionAt the start of each conversation the psychologist may ask if, as a result of the previous session, any thoughts or experiences have remained, that still need attention. At the end of each session five minutes should be reserved for asking about how the current session was experienced, and if there were moments in this session (positively or negatively) that the patient especially keeps in mind. At the end of the session a next appointment is made (sessions 1 through 5). In the last session (session 6, if desired session 7 or 8) ample time is reserved for the clinical evaluation of the treatment as a whole (e.g. 15’’-20’’), related to 3 sub-goals:

a. the physical implications/ symptoms of the diseaseb. emotion regulation with regard to the emotional response to/ perception of the illnessc. the relational implications of the illness (with regard to the relationship between the patient and his partner, or other close people)

Furthermore, attention can be paid to the future: how can the patient apply the issues handled during the intervention period in everyday life, how can the patient autonomously keep paying attention to his physical, emotional and social-relational well-being? This information can be included in a written report about the results of the intervention.

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7.4.2. Evaluation by means of previously defined outcome measuresIn the intervention study that this protocol is part of, we inquired if the psychological treatment could have a positive effect on a number of outcome-parameters. We consider the ‘degree of experienced shortness of breath’ (dyspnea) as the primary outcome measure. For this, we used the Chronic Respiratory Questionnaire (CRQ) in this study, a frequently used measuring instrument in COPD care, designed to measure the quality of life (Schunemann et al., 2005). The CRQ has four sub-scales: dyspnea, fatigue, emotions and control (‘mastery’). As secondary outcome measures we chose the patients scores on an anxiety and depression questionnaire, the Hopkins Symptom Checklist-25 (HSCL-25, Derogatis, Lipman, & Rickels, 1973), the exercise capacity of the patient (determined by means of a walking test), the overall quality of life (measured by questionnaire) and the quantity of the patient’s health care usage (e.g. the number of hospitalizations in the year after the start of the intervention). We wanted to inquire if the changes in patient scores in the outcome measures above, after participation in the described intervention, relate to changes in illness perception, an increase in the experienced degree of control of one’s own health (perceived health competence) and an increase in mastery of one’s behavior that may control the disease (self-efficacy). The questionnaires mentioned above will be sent to the patient on paper, from a research assistant. It is important that the psychologist knows that his patient is subjected to these questionnaires. During the treatment he does not need to take action in this, but if the patient asks questions about them, the psychologist can let him know that although he is familiar with this feature, he will not take any notice of the contents completed forms, to prevent endangering the neutrality of the study. If desired, the patient can contact the research assistant about the questionnaires. To be able to make reliable assertions, based on statistic power analyses, a sufficient number of participants is required in both a control and an intervention group. Power analysis has shown that for this research in total at least n=160 patients need to participate of which, after informed consent, n=80 should be randomized to the control group and n=80 to the intervention group.

7.4.3. Process evaluationFinally, for the benefit of the research, a process evaluation has to take place, in order to follow the therapy process. The sessions are to be recorded by means of audio or videotapes, in order to observe to what extent the treatment has been applied as described in the protocol (‘treatment integrity’). In the ‘informed consent’ form the patients have been asked whether they agree with this. The psychologist is skilled in operating the recording equipment.



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Beck, J. S., & Geluk, H. L. C. (2011). Basisboek cognitieve therapie. HBUitgevers, Baarn.Benke, C., Hamm, A. O., & Pane-Farre, C. A. (2017). When dyspnea gets worse: Suffocation fear and the

dynamics of defensive respiratory responses to increasing interoceptive threat. Psychophysiology, 54 (9), 1266-1283. doi:10.1111/psyp.12881.

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Derogatis, L., Lipman, R., & Rickels, K. (1973). The Hopkins symptom checklist (HSCL): A measure of primary symptom dimensions in psychological measurement. Modern Problems in Pharmacopsychiatry. Basel Karger, 7(0), 79-110.

Dowson, C. A., Town, G. I., Frampton, C., & Mulder, R. T. (2004). Psychopathology and illness beliefs influence COPD self-management. Journal of Psychosomatic Research, 56(3), 333-340. doi:10.1016/S0022-3999(03)00040-0.

Elliott, R. (2013). Person-centered/experiential psychotherapy for anxiety difficulties: Theory, research and practice. Person-Centered & Experiential Psychotherapies, 12(1), 16-32.


Elvins, R., & Green, J. (2008). The conceptualization and measurement of therapeutic alliance: An empirical review. Clinical Psychology Review, 28(7), 1167-1187. doi:10.1016/j.cpr.2008.04.002.


Greenberg, L. S. (2017). Emotion-focused therapy of depression. Person-Centered & Experiential Psychotherapies, 16 (2), 106-117.

Leventhal, H., Phillips, L., & Burns, E. (2016). The common-sense model of self-regulation (csm): A dynamic framework for understanding illness self-management. Journal of Behavioral Medicine, 39(6), 935-946. doi:10.1007/s10865-016-9782-2

Mlotek, A. E., & Paivio, S. C. (2017). Emotion-focused therapy for complex trauma. Person- Centered & Experiential Psychotherapies, 16 (3), 198-214.

Norcross, J. C. (2002). Psychotherapy relationships that work: Therapist contributions and responsiveness to patients. Oxford University Press.

Sanderman, R., Wempe, J.B., Pool, G. (2007). Een psychologische interventie bij COPD-patiënten die opgenomen zijn; A psychological intervention in COPD patients hospitalized with an exacerbation. Retrieved from https://research.longfonds.nl/database/een-psychologische-interventie-bij-copd-patienten-die-opgenomen-zijn.

Schunemann, H. J., Goldstein, R., Mador, M. J., McKim, D., Stahl, E., Puhan, M., Guyatt, G. H. (2005). A randomised trial to evaluate the self-administered standardised chronic respiratory questionnaire. The European Respiratory Journal, 25 (1), 31-40. doi:25/1/31.

Stoeckel, M. C., Esser, R. W., Gamer, M., Buchel, C., & von Leupoldt, A. (2018). Dyspnea catastrophizing and neural activations during the anticipation and perception of dyspnea. Psychophysiology, 55 (4). doi:10.1111/psyp.13004.

Suveg, C., Jones, A., Davis, M., Jacob, M. L., Morelen, D., Thomassin, K., & Whitehead, M. (2018). Emotion-focused cognitive-behavioral therapy for youth with anxiety disorders: A randomized trial. Journal of Abnormal Child Psychology, 46 (3), 569-580. doi:10.1007/s10802- 017-0319-0.

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Timulak, L., & McElvaney, J. (2016). Emotion-focused therapy for generalized anxiety disorder: An overview of the model. Journal of Contemporary Psychotherapy, 46 (1), 41-52.

Trijsburg, R. (2003). Therapeutische factoren en interventies; Therapeutic factors and interventions. Leerboek Integratieve Psychotherapie. University of Amsterdam, Amsterdam.

Wang, H., Wei, Z., Li, X., & Li, Y. (2017). Efficacy of emotion regulation for patients suffering from chronic obstructive pulmonary disease. Iranian Journal of Public Health, 46 (1), 50-54.



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Appendix 1. Rationale of the cognitive approach (explanation for the patient)People who suffer from a chronic disease have certain thoughts about their illness. These thoughts influence the feelings that go together with them, as well as the way the patient deals with the disease (the behavior). For instance, a patient can have certain thoughts about what the disease implies, what the cause of the disease is, what the future course of the disease will be, and which influence the patient can have on the course of the disease and its symptoms. (To the patient:) Do you recognize this?Sometimes the thoughts people have about their disease are not realistic, which means their thoughts do not correspondent with actual facts, or are exaggerated or, the other way around, minimalized. Still, such ‘nonrealistic’ thoughts do affect someone’s behavior and feelings, and in relation to that can be ‘not helpful’, inadequate, or mal-adaptive. Also, vice versa, feelings and behavior can cause someone to have particular (irrational) thoughts. You can learn to become aware of your thoughts, and by doing so learn to recognize which thoughts are helpful/adaptive and which are not. Likewise, you can learn to turn ‘unhelpful’ thoughts in another, alternative direction. You can learn to be more in control of your own thoughts. In this session and maybe in the coming sessions we will work on this.

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Appendix 2. Rationale of the process-experiential approach: dealing with emotionsEmotions have a number of functions: 1. They show something important is going on in our lives 2. They tell us what we need 3. They give us a feeling of ‘existence’, being therePeople with a chronic disease can experience all kinds of emotions, because of their disease. For instance, they can feel afraid, angry or sad. These are normal responses to having the disease; the emotions tell you how you experience the situation and what is important to you in this. These emotions can vary from person to person. Similarly, the way people deal with these emotions varies. For instance, some people suppress their emotions as much as they can and they do not want to talk about them, because for them these emotions are ‘heavy’ and they fear not be able to handle them. On the other hand there are people who like to talk about it all with others, because by going through their emotions they get a clearer view on themselves. It is important to know how especially you, being this particular person, deal with your emotions and if and how your way of dealing with them helps you in your present situation; the way you deal with your emotions influences the burden that your disease imposes on you.In our sessions we will pay attention to your emotions and the way you deal with them.



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Appendix 3. Circle to outline social support

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The general aim of this thesis was to explore psychological aspects of COPD. In the final chapter the main findings are discussed and related to recent research. In addition, methodology aspects and clinical implications are discussed. Also, recommendations for future research are provided.

Main findingsCOPD is a demanding disease and psychological aspects play a part in the disease burden. However, still a lot is unclear about the exact role of these psychological aspects. The research presented in this thesis investigates several potentially burdening psychological aspects and possible ways to deal with them. Most patients with COPD face psychological or medical comorbidities. Many consequences of psycholical comorbidities have been reported in prior studies, mortality risk being one of those. Since the presumed relationship between comorbidities and mortality has been given little attention in stable patients with COPD, it was investigated in this thesis (Chapter 2). The results show high levels of depressive symptoms and medical comorbidities in the stable patients. However, no association was found between comorbid medical conditions or high depressive symptoms and long-term mortality rates in this population. Only heart failure showed an unadjusted association to mortality, which means there possibly is an association between heart failure and mortality in patients with stable COPD. Given the character of the disease and the high levels of distress (in terms of anxiety or depressive symptoms), patients with COPD may report a high need for spousal support. However, research into spousal support concerning patients with COPD is scarce, especially with regard to the perceived negative experiences concerning spousal support and its consequences. Therefore, our study presented in this thesis (Chapter 3) handles the relationship between distress on the one hand, and on the other hand patients’ perceptions, partners’ perceptions, as well as discrepancies between patients’ and partners’ perceptions of overprotection or protective buffering. The results show that distress is associated with patients’ perceptions of protective buffering and discrepancies in spouses’ perceptions of overprotection. Greater partner reports of overprotection, as compared with patient reports, were related to more distress in patients. Distress measures are frequently used in COPD research, as well as in clinical practice. One of the often-used questionnaires is the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983). It is a short measure, which gives an indication of levels of anxiety or depression in somatic patients. However, we found out that four different Dutch versions of the HADS are around, and this triggered our interest about the way the HADS is handled cross-culturally in research. In this thesis these cross-cultural issues are described (Chapter 4). We concluded that researchers should be very careful in using translated versions of the HADS, for instance in COPD research, as too many problems exist with the translation and cross-cultural validation of this questionnaire. In addition, readers of published cross-cultural studies should be skeptic regarding the validity of findings generated with the HADS. Also, researchers should better document what was done to ensure the cross-cultural validity of translated versions of the HADS. The earlier mentioned high levels of distress reported in COPD literature, as well as the demand for distress screening, have induced the investigation of the screening capacities of two relevant questionnaires: the Hopkins Symptom Checklist-25 (HSCL-25) (Derogatis, Lipman, &

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Rickels, 1973) and the Clinical COPD Questionnaire (CCQ) (van der Molen et al., 2003), Mental State subscale. They are frequently used screening measures among patients with COPD. We examined if high distress levels, measured with those two questionnaires, would be related to a perceived need for psychosocial care (Chapter 5). The results showed that distress is frequently reported in patients with COPD. However, although a substantial part of these patients did express a need for psychosocial care (28%), both of the measures did not identify enough patients with a need for psychosocial care to indeed advocate distress screening with those questionnaires. In addition, no relationship was found between a need for psychosocial care and illness variables or medical comorbidities. Patients with a need for psychosocial care were somewhat younger than patients without a need, which may imply that younger patients more strongly feel a need to work on their distress and/or do more often expect that their situation can ameliorate. It is in the best interest of patients with COPD that their disease burden is decreased, for instance by psychological interventions. However, solid research on the effectiveness of psychological interventions for patients with COPD is scarce. Therefore, we had the intention to execute an intervention study, planned as a RCT. The protocol for this intervention is extensively described in Chapter 7. In short, we designed a cognitive-experiential intervention. The purpose of the intervention was to give patients with COPD more personal control over physical, emotional and social consequences of their disease. However, we experienced serious inclusion and dropout problems while carrying out the intervention study. As a result, we were not able to draw conclusions about the effectiveness of the intervention as such. We puzzled our brains over the reasons for these inclusion and dropout problems and reflected on those problems in this thesis (Chapter 6). We formulated some recommendations for future research on psychological interventions in patients with COPD.

The outcomes of this study within the context of recent COPD literatureOur study on the relationship between comorbidities and mortality in patients with stable COPD suggests a relationship exists between congestive heart failure and mortality in this population. This finding fits within recent developments in COPD research. In the past years, several studies have looked into the co-existence of COPD and heart failure, or other heart diseases, and consequences or medical treatments for patients with both diagnoses (Canepa et al., 2018; Rushton, Satchithananda, Jones, & Kadam, 2015; Testa et al., 2017). However, a study by Plachi et al (Plachi et al., 2018) did not show higher mortality rates in patients diagnosed with both COPD and heart failure, compared to patients with either COPD or heart failure. In this group (n=41) two parameters were associated with higher mortality: the inability to exercise and hospitalization rate. As for the relationship between depressive symptoms and mortality, a recent study shows that a history of falls and dyspnea were related to one-year mortality, in COPD patients diagnosed with a depression (Yohannes et al., 2016). Recently, an integrated approach is called for in cardiopulmonary patients (Roversi, Fabbri, Sin, Hawkins, & Agusti, 2016). Although the attention for issues in spousal relationships of patients with COPD is increasing, still research conducted on this topic seems to be only a fraction of the total research conducted in patients with COPD. Recent studies show that awareness to the wellbeing of partners is of importance because of the assumed association of distress in patients and partners (Mi et al.,

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2017). Another research study shows that dyadic coping may change over time (Vaske et al., 2015). Recently, a letter to the editor was published by colleagues in COPD-research (Liccardi et al., 2018), in response to our screening paper (Maters, Pool, Sanderman, Wempe, & Fleer, 2018a). The authors discuss underlying mechanisms of depression and anxiety in asthma and translate those to distress in COPD. In our response to this letter we stated that the mechanisms discussed may turn out to be useful in the explanation of distress, and/ or a need for psychosocial care in patients with COPD (Maters, Pool, Sanderman, Wempe, & Fleer, 2018b). It is however beyond the scope of this thesis to discuss these suggested mechanisms in detail. Unfortunately, we were not able to present data on the effectiveness of the intervention (Chapter 6), due to inclusion and dropout problems in our intervention study. In recent COPD literature these issues have received attention. For instance, in a qualitative study, fear, loss and a desire for improvement of care were identified as relevant related themes for inclusion. In addition, a review shows that attendance to support programs was influenced by a self-help attitude, positive intervention representations, having received information or advice in favor of the program, not being concerned on physical/practical barriers and past experiences with support programs (Sohanpal, Seale, & Taylor, 2012). Further, self-conscious emotions could act as barriers to psychosocial care (Harrison, Robertson, Goldstein, & Brooks, 2017). Concerning the drop out problems, in support programmes unmet expectations after attending a few sessions, perceived severity of symptoms, perceived physical/practical concerns related to attendance and no encouragement to continue with the programme due to staying alone were identified as being relevant. The recent research in COPD concerning inclusion and dropout issues is important and necessary to be able to find effective psychological interventions for patients with COPD after all.

Methodological considerationsConcerning the research presented in this thesis, several methodological remarks can be made. A strength is that a large sample of patients could be included in our screening study. These patients were willing to participate, according to the high response rate. Another strength is that a novel approach was used in this study: patients were asked for their psychosocial care needs, which had not been done before. Furthermore, a strength is the way social support was investigated, in a dyadic way and with a focus on negative effects of spousal support. This type of research is still scarce in COPD research. Besides, concerning our intervention protocol, partners were explicitly invited to participate in one or more sessions, which focused not only on illness-related cognitions, but also on emotions and illness-related emotion-regulation, according to principles of Emotion Focused Therapy (Elliott, Watson, Goldman, & Greenberg, 2004). A limitation is the usage of the HADS in the mortality paper (Chapter 2). We were not yet aware of the cross-cultural problems with this questionnaire at the time we planned the study. However, when we later on found out that there were four different Dutch versions of the HADS, which in their different translations showed the cultural sensitivity of the scale, we worked on this issue in our separate study concerning the HADS (Chapter 4). Another limitation is the usage of a single question to investigate need for psychosocial care in the screening study. An interview,

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or several questions, would have given more information and could have assured that patients perceived the question univocal.

Clinical implications of the findingsThe results presented in this thesis stress the importance of sufficient attention to psychological and social issues in clinical practice, especially where it concerns chronic, serious illness with a heavy illness burden, such as in COPD. To start with, our finding that distress is related to perceptions of partner support implies that patients and partners perceptions with regard to support provided need to be investigated by health care providers. The impression is that pulmonary physicians’ checkups are time limited and therefore they usually focus on medical issues. However, when the neglect of comorbid psychological and social issues results in a higher disease burden and deterioration of functioning, it seems ‘a shot into an open goal’ to attain a more holistic approach for this patient population. But as we know, it is a tough process to turn the medical model into a more biopsychosocial model (Kaptein et al., 2009). Therefore, in the Dutch Health Care system, addressing the aforementioned better fits within the tasks of the specialized lung nurses in hospitals, or general practitioner nurses in primary care. Patients with COPD, who are involved in a spousal relationship, can be referred to a social worker by their physicians for investigation of relationship issues and counseling. If more pervasive relational problems exist, the social worker should refer to a health care provider specialized in relational therapy. Two studies in this thesis showed that there is no straightforward relation between distress-levels and the psychosocial care needs in patients with COPD (Chapters 5 and 6). As a result, clinicians cannot rely on distress questionnaires to know if needs for psychosocial care exist in their patients. In addition, patients with COPD experience barriers with regard to expressing their need for psychosocial care. In the communication with COPD patients extra difficulties may exist because of the physical symptoms of COPD, such as coughing by patients, or the experience of increasing dyspnea when talking and/or when emotions come up. Patients may therefore avoid talking about psychological issues. Health care providers should be aware of these barriers and address them. Ideally, physicians understand the potential influence of psychological issues on the disease and patients’ health behavior. In addition, they ideally have the skills to gain insight into the patients’ needs and doubts (Kaptein, Fischer, & Scharloo, 2014). But, as mentioned before, physicians have to deal with time-constraints in their clinical work, and this may keep them from discussing psychosocial care needs and/or implications with their patients. However, when psychosocial care needs are not addressed by physicians, this implies patients either do not get the care they need, or look for it elsewhere. In my clinical work, as a health care psychologist in a hospital, it occurs to me that the department of Medical Psychology receives relatively little referrals concerning patients with COPD, in comparison to patients with other diseases (e.g. cancer or cardiac conditions). New initiatives in health care, such as Value Based Health Care (Porter, 2010) hopefully increase the awareness of psychosocial care needs in COPD. I encourage psychologists and social workers to actively contact pulmonary physicians and primary care physicians, about the added value of psychosocial referrals with regard to COPD care. In a recent study by Ratcliff et al (Ratcliff et

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al., 2017) it is even suggested that medical providers should receive ‘sustained and personalized support’, to increase their recognition of mental health issues or treatment numbers, based on their research in veterans with CHF and/ or COPD, as well as the work of others (Sinnema et al., 2015). Unfortunately, we have the impression that different Dutch versions of the HADS are still being administered, in hospital settings or in primary care, since our paper was published in 2013 (Chapter 4) and cited 25 times (according to PubMed, accessed in November 2018). It may be that health care providers assume that the HADS has proven its worthiness and quality, and is used without criticism and obtained via unofficial ways. This illustrates the gap between science and clinical care, which may lead to ‘false’ conclusions concerning patient’s anxiety- and/or depression-scores.

Recommendations for future researchBased on the findings of our studies, presented in this thesis, we recommend more research on psychosocial care needs in patients with COPD, as well as on dyadic coping of patients and their partners. In addition, we recommend a shift in COPD research from investigating a relationship between distress/ depression levels and mortality rates to pathways or mediators/ moderators of this assumed association. Literature shows there is no straightforward relationship between comorbidities or depressive symptoms at the one hand and mortality at the other hand, and a possible relationship is more complicated than assumed before. From a clinical perspective, it is relevant to understand why (some) patients with COPD and psychological symptoms run the risk of dying earlier than others. Up until now, this has been given little attention in COPD research. A question for the future remains what an effective psychological treatment for patients with COPD would look like. In such future research much effort has to be paid to guard the rationale and feasibility of a planned intervention. In fact, these issues need separate research: what do patients really want and need, what adds to their motivation to spend energy in professional, psychological treatment?

Concluding remarksWith the studies collected in this thesis we shed some light on several issues concerning the physical and psychological impact of COPD, a chronic and life-threatening illness with many daily symptoms and constrains. Thanks to our difficulty to perform the originally planned intervention study, we learned a lot about the complexity that is inherent in suffering from COPD at the one hand, and how to plan and perform adequate research on adequate help at the other hand. Still, a lot needs to be understood better and we hope that our studies are of help for future research on the psychology of COPD. At least, this thesis has made us again aware that COPD should be treated not only as a medical illness, but most and for all as a biopsychosocial disease.

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147

SummaryCOPD (Chronic obstructive pulmonary disease) is a highly prevalent progressive lung disease, characterized by a chronic obstruction of lung airflow. Symptoms are, for example, dyspnea (breathlessness) and frequent coughing. The disease implies a considerable burden for patients. They may become impaired in daily life and social activities and may suffer from exacerbations (episodes of increased symptoms). COPD may induce strong emotions in patients; anxiety and/or depressive symptoms are frequently reported. Although COPD is a medical condition, it has to be considered a disease with bio-psycho-social aspects. However, we do not know much yet with respect to the psychological and social aspects of this illness. Therefore, in this thesis we explore several psychological aspects of COPD. In particular, we discuss respectively: a) the relationship between COPD, comorbidities and mortality (Chapter 2), b) the relationship between psychological distress and perceptions of spousal support (Chapter 3), c) the cross-cultural use of the Hospital Anxiety and Depression Scale (HADS), a frequently used screening instrument in COPD research (Chapter 4), d) the outcomes and adequacy of a screening-procedure concerning need for psychosocial care (Chapter 5), and a study concerning problems with the implementation of a psychological intervention study (Chapter 6). The psychological intervention protocol we designed to encounter several central issues in coping with COPD, is described in detail in Chapter 7. Below, we describe the contents of these chapters in brief. To start with, in Chapter 2 we present the results of our study concerning the association of COPD and comorbidities with mortality, in patients with stable COPD. In total, 224 patients were included in this study; mean age 61.2 (±10.00), 48.2% female, median follow up 4.2 years. In this sample, 70% of the patients had a comorbid medical condition according to the Charlson Comorbidity Index (CCI) or high depressive symptoms as assessed with the Hospital Anxiety and Depression Scale (HADS) and Symptom Checklist-90 (SCL-90). During follow-up, 51% of all patients died and patients with heart failure showed the highest mortality rate (75%). The Cox proportional hazard model showed that the presence of comorbidities or high depressive symptoms were not related to survival, but age, fat-free mass and exercise capacity were. An unadjusted association between heart failure and survival was found. Our finding that the presence of comorbidities or high depressive symptoms were not related to mortality is in line with the work of some researches and contradicts with the work of others. We conclude that the value of the CCI is questionable when used in relatively small groups and therefore should be handled carefully. In addition, our finding that there is an unadjusted association between heart failure and survival, in our sample, points at awareness of adequate diagnosis and treatment of comorbid heart failure in COPD. Research into partner support of patients with COPD is still scarce; in chapter 3 we present our study on partner support and its association with distress. The aims of this study were (1) to investigate if discrepancies between patients’ and partners’ perceptions of overprotection and protective buffering are associated with distress and (2) to evaluate if the direction of the differences between patients’ and partners’ perceptions is associated with distress. We were able to use the data of 68 couples; mean age of patients 64 (± 9.5), mean age of partners 62 (± 9.7), 43% female patients, 88% were married, the duration of the relationship was 34.2 years on average (± 14.2). Distress was assessed using the Hopkins Symptom Checklist-25 (HSCL-25), patients’ and partners’

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perceptions of (un-)supportive partner behavior were assessed with a questionnaire measuring overprotection and protective buffering. To test the hypotheses, correlations were inspected and multiple regression analyses was performed. We found an independent association between distress levels at the one hand and patients’ perceptions of protective buffering at the other hand. This association may suggest that patients report higher levels of distress when they perceive that their partner hides concerns and acts as if there is ‘nothing the matter’ or that distressed patients elicit more protective buffering behavior from their partners. We also found that patients’ distress was associated with discrepancies between patients’ and spouses’ perceptions of overprotection. Greater partner reports of overprotection (as compared to patient reports) were related to more distress in patients; this was contrary to what we had expected. As we were the first to pay attention to such associations, the results need to be replicated. Also, future studies may shed light on the mechanisms involved. Chapter 4 presents our results on a study concerning the cross-cultural use of the Hospital Anxiety and Depression Scale (HADS). This study was performed because, at the start of our project concerning psychosocial issues related to COPD, we intended to apply this widely used questionnaire in our research on the effectiveness of a psychological intervention. However, we found out there where four different Dutch translations of the HADS and also that problems were reported in HADS literature. Therefore, we decided not to use this questionnaire in our intervention study and to look into the cross-cultural use of the HADS instead. The aim of this study was to examine if the problems of the HADS, as reported in literature, could be related to translation-issues and the cross-cultural use of the HADS and, therefore, to its construction. We identified authors’ awareness of difficulties translating the HADS by examining 20% of studies using the HADS, obtained by a systematic literature search. We found that only 45% of the 417 papers from non-English speaking countries, indicated the usage of a translated version of the HADS. In 54% of the studies validated translations were cited. Seventeen reviews were examined and only seven mentioned issues of language and culture. We concluded that the contents and response options of the HADS make it difficult to translate. So, in our opinion, the issues reported in HADS literature could indeed be created (in part) by translation and cross-cultural problems. However, researchers tend to overlook these issues and most researches did not explicitly report on the way the translated version was acquired and how validation was ensured in our study. We advise to be wary of the validity of findings obtained with translated versions of the HADS. Also, we advise researchers to better document in their reports what was done to ensure the cross- cultural validity of translated versions. In the COPD literature screening for distress is advocated, in order to identify patients in need for psychosocial care. However, whether an association exists between distress and a need for psychosocial care was not yet investigated. Therefore, in Chapter 5 we look into this relationship and present the results of our study on the identification of patients with a need for psychosocial care through screening with the HSCL-25 and the Clinical COPD questionnaire. We examined the screening capacities of the HSCL-25 and the Mental State subscale of the CCQ, as well as several characteristics of patients with a need. Outpatients were assessed with the HSCL-25, CCQ and a question on their need for psychosocial care. We used a Chi-square to compare the percentage of patients with a need and HSCL-25 ≥39 with the percentage of patients with a

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need and CCQ Mental State>2 .The sample existed of 323 patients; 57% of them scored high on the HSCL-25 (≥39) and 20% on the CCQ Mental State (>2), 28% reported a need for psychosocial care. The HSCL-25 identified a higher percentage of patients with a need for psychosocial care than the CCQ Mental State (χ2=9.41, p<.002), which was in line with our expectations. Patients with a need for psychosocial care were somewhat younger than patients without a need (t=4.48, p<001), but no differences existed for sex, FEV1, FEV1%predicted or medical comorbidities. We concluded that distress screening is questionable as a method to identify COPD patients who endorse a need for psychosocial care. Although the HSCL-25 identified more patients in need than the CCQ Mental State scale, not all patients with a need for psychosocial care were identified by either of these instruments. Therefore, the relationship between distress scores and a need for psychosocial care should not be taken for granted. More research is needed to investigate if mediators or moderators play a part between distress outcomes and need for psychosocial care. Also, alternative methods to identify patients in need for psychosocial care need to be evaluated. In chapter 6 we discuss the issues we came across in our psychological intervention study. Although we paid extra attention to approaching and motivating patients, we still experienced serious issues concerning inclusion and dropout. Over 400 hospitalized and outpatients of the University Medical Center Groningen and the Martini Hospital Groningen (The Netherlands) were approached by a research assistant to participate. Of these, only 46 patients (57% of the interested patients) could be randomized to the intervention condition (n= 25) or control condition (n=21); this number was far below the number needed (n=160) to examine the statistical effectiveness of the intervention. At the end, only 32% (n= 8 of n=25) received the intervention as planned and 29% (n=6 of n=21) dropped out in the control condition. So, the dropout rate for both conditions combined was 50%. As a consequence, we were not able to report on the effectiveness of this psychological intervention. Therefore, we reflected on the issues and formulated recommendations for future psychological intervention studies in general, and for COPD in particular. Generally, we conclude that including patients for psychological intervention studies is more complex than we had expected. In hindsight, we acknowledge that we should have addressed beforehand the level of knowledge and insight of patients concerning their illness, their perceptions on physical and practical barriers, their cognitions concerning psychosocial care and COPD care in general, their types of illness-denial and barriers to discuss psychological issues, as well as self-conscious emotions. Concerning the high dropout rate in our intervention study we conclude that we should have checked, before the start of the intervention, more explicitly with the eligible patients if the goals of the intervention were really clear to them, as well as consistent with their needs. We suggest that in future intervention studies prior patient participation is of utmost relevance to prevent later problems concerning inclusion and/or dropout. In chapter 7 we present our cognitive-experiential intervention. We describe the rationale for the intervention, as well as the manual, to be used by psychologists. The cognitive- experiential intervention is targeted at learning patients to get more control over: a) the physical consequence/ symptoms of the disease, b) emotions or perceptions regarding the disease and c) the consequences of the disease regarding relationships. Cognitive and process-experiential techniques are suggested and described to realize these goals.

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The main findings presented in this thesis are discussed in Chapter 8 and related to recent research. Also, methodological considerations, clinical implications and recommendations for future research are discussed. To conclude, this thesis sheds some light on several issues concerning the physical and psychological impact of COPD. However, a lot of work needs to be done still and hopefully this thesis is helpful for future research concerning the psychology of COPD. The research presented in this thesis emphasizes that COPD should be treated as a bio- psycho-social illness.

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SamenvattingCOPD is een veelvoorkomende progressieve longziekte, met symptomen als dyspneu (kortademigheid/ benauwdheid) en hoesten. De ziekte brengt een flinke ziektelast met zich mee, patiënten kunnen beperkt raken in hun dagelijks leven of sociale activiteiten en lijden aan longaanvallen (periodes met ernstiger symptomen). COPD kan sterke emoties oproepen bij patiënten en angst of depressieve symptomen worden veelvuldig gerapporteerd. Hoewel COPD wordt beschouwd als een ziekte met bio-psycho-sociale aspecten, is er nog steeds veel onbekend over de psychologische en sociale aspecten. In dit proefschrift wordt een aantal psychologische aspecten nader in kaart gebracht. In het bijzonder, bespreken we respectievelijk: a) de samenhang tussen co-morbiditeit en overlijden (hoofdstuk 2), b) de samenhang tussen stress en ervaren partner steun (hoofdstuk 3), c) het gebruik van vertaalde versies van de Hospital Anxiety and Depression Scale (HADS; een vragenlijst die regelmatig wordt gebruikt in COPD onderzoek) in wetenschappelijke studies (hoofdstuk 4), d) de screening van een behoefte aan psychosociale zorg (hoofdstuk 5) en e) de problemen die wij hebben ervaren bij het uitvoeren van een onderzoek naar een psychologische behandeling (hoofdstuk 6). Verder bespreken we in hoofdstuk 7 getailleerd een protocol van een psychologische interventie. In deze samenvatting beschrijven we in het kort de inhoud van de verschillende hoofdstukken. Ten eerste presenteren we in hoofdstuk 2 de resultaten van onze studie naar de samenhang tussen co-morbiditeit en overlijden, in patiënten met stabiele COPD. In totaal hebben 224 patiënten deelgenomen aan deze studie; gemiddelde leeftijd 61.2 (±10.00), 48.2% vrouw, mediane follow up tijd 4.2 jaar. Van deze patiënten had 70% een co-morbide medische aandoening volgens de Charlson Comorbidity Index (CCI) of veel depressieve symptomen, gemeten met de Hospital Anxiety and Depression Scale (HADS) en de Symptom Checklist-90 (SCL-90). Tijdens de follow-up stierf 51% van de patiënten, waarbij het sterftecijfer het hoogst was bij mensen met co-morbide hartfalen (75%). Het ‘Cox proportional hazard model’ liet zien dat de aanwezigheid van co-morbiditeit of veel depressieve symptomen niet gerelateerd waren aan overlijden. Leeftijd, vetvrije massa en het uithoudingsvermogen waren voorspellend voor overlijden. Een niet gecorrigeerde samenhang werd gevonden tussen hartfalen en overlijden. Onze bevinding dat de aanwezigheid van een co-morbide aandoening of depressieve symptomen niet samenhangt met overlijden komt overeen met de bevindingen van sommige onderzoekers, maar is in tegenspraak met de bevindingen van andere onderzoekers. We concluderen dat de waarde van de CCI ter discussie staat bij relatief kleine aantallen proefpersonen en dat er zorgvuldig mee moet worden omgegaan. Verder, onze bevinding dat er een ongecorrigeerde samenhang is tussen hartfalen en overlijden, geeft aan dat er alertheid op zijn plaats is met betrekking tot een adequate diagnose en behandeling van hartfalen bij mensen met COPD. Er is nog weinig onderzoek gedaan naar partnersteun bij mensen met COPD. In hoofdstuk 3 bespreken we onze studie naar de relatie tussen partnersteun en stress. Doelen van dit onderzoek waren: (1) te onderzoeken of discrepanties tussen patiënten en hun partners ten aanzien van overbescherming en beschermend bufferen gerelateerd zijn aan stress en (2) na te gaan of de richting van de verschillen in percepties tussen patiënten en hun partners gerelateerd is aan stress. In totaal namen 68 koppels deel aan het onderzoek. De gemiddelde leeftijd van patiënten was 64 (± 9.5) en van hun partners 62 (± 9.7), 43% van de patiënten was vrouw, 88% was

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getrouwd en de gemiddelde duur van een relatie was 34.2 jaar (±14.2). De mate van stress werd bepaald aan de hand van de Hopkins Symptom Checklist-25 (HSCL-25) en voor het in kaart brengen van de percepties van patiënten en partners met betrekking tot partnersteun werd een vragenlijst gebruikt voor overbescherming en beschermend bufferen. Om de hypothesen te toetsen werden correlaties bekeken en meervoudige regressie analyses uitgevoerd. We vonden een onafhankelijke samenhang tussen stress en de percepties van de patiënt ten aanzien van behoedend gedrag (beschermend bufferen). Dit suggereert dat patiënten die het idee hebben dat hun partner zorgen voor hen verbergt en net doet of er niets aan de hand is meer stress rapporteren, of dat patiënten die meer stress ervaren meer behoedend gedrag oproepen bij hun partners. We vonden ook dat de mate van stress bij patiënten was gerelateerd aan discrepanties in de percepties van de beide partners ten aanzien van overbescherming. Wanneer partners benoemen meer overbeschermend gedrag te vertonen (vergeleken met de patiënten) dan bleek dit gerelateerd te zijn aan meer stress bij patiënten, in tegenstelling tot wat wij hadden verwacht. Deze bevinding dient gerepliceerd te worden, aangezien we de eersten waren die dit verband vonden. Verder kunnen de onderliggende mechanismen in kaart worden gebracht in toekomstig onderzoek. Hoofdstuk 4 bespreekt de uitkomsten van onze studie naar het interculturele gebruik van de Hospital Anxiety and Depression Scale (HADS). In eerste instantie waren we van plan deze bekende vragenlijst te gebruiken in ons onderzoek naar een psychologische behandeling. Echter, toen bleek dat er vier verschillende Nederlandse versies circuleerden van deze lijst. Tevens vonden we in de literatuur dat er melding werd gemaakt van diverse problemen met de HADS. Daarop besloten we om de vragenlijst niet te gebruiken in ons onderzoek naar een psychologische behandeling. In plaats daarvan zijn we gaan onderzoeken hoe er door onderzoekers wordt omgegaan met het gebruik van vertaalde versies van de HADS. Het doel van ons onderzoek was om in kaart te brengen of er in de literatuur problemen worden gerapporteerd die gerelateerd zouden kunnen zijn aan de vertaling en het interculturele gebruik van de HADS. We onderzochten de oplettendheid van onderzoekers met betrekking tot moeilijkheden in de vertaling van de HADS door 20% van de artikelen te bekijken van studies waarbij een vertaling van de HADS was gebruikt, na een literatuur onderzoek. We vonden dat er in slechts 45% van de 417 artikelen uit niet Engelssprekende landen melding werd gemaakt van het gebruik van een vertaalde versie van de HADS. In 54% van de artikelen werd verwezen naar gevalideerde vertalingen. Zeventien reviews werden gedetailleerd bekeken en daarvan meldde slechts zeven dat er problemen waren met taal of cultuur. We concludeerden dat de inhoud en antwoordmogelijkheden van de HADS het een moeilijke vragenlijst maken om te vertalen. De gerapporteerde problemen in de HADS literatuur kunnen inderdaad (deels) worden veroorzaakt door het gebruik van vertalingen en interculturele problemen. Onderzoekers zijn geneigd dit over het hoofd te zien en de meeste van auteurs van artikelen rapporteren niet expliciet over de manier waarop een vertaling werd verkregen en of er zorg voor was gedragen dat een vertaling was gevalideerd. We suggereren scepticisme ten aanzien van de validiteit van bevindingen die zijn verkregen met vertaalde versies van de HADS. Verder adviseren we onderzoekers om zorgvuldiger te zijn in het rapporteren over wat zij hebben gedaan om de interculturele validiteit van vertaalde versies van de HADS te waarborgen. In de COPD literatuur wordt screening naar de aanwezigheid van stress aangeraden, als een

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manier om patiënten te identificeren die psychosociale zorg nodig hebben. Maar, of er een samenhang is tussen stress en een behoefte aan psychosociale zorg werd nog niet in kaart gebracht. Wij hebben hier onderzoek naar gedaan en presenteren de resultaten van dit onderzoek naar het identificeren van patiënten met een psychosociale hulpbehoefte doormiddel van screening met de HSCL-25 en de Clinical COPD questionnaire (CCQ) in hoofdstuk 5. We onderzochten de screening capaciteiten van de HSCL-25 en de subschaal Mentale Toestand van de CCQ en een aantal karakteristieken van patiënten met een hulpbehoefte. Patiënten van een polikliniek werd gevraagd de HSCL-25, CCQ en een vraag over hun hulpbehoefte in te vullen. We gebruikten een Chi-kwadraat om het percentage van patiënten met een hulpbehoefte en HSCL-25≥39 te vergelijken met het percentage van patiënten met een hulpbehoefte en CCQ Mentale Toestand >2. Onze groep proefpersonen bestond uit 323 patiënten; 57% van hen scoorde hoog op de HSCL-25 (≥39) en 20% op de CCQ Mentale Toestand (>2); 28% rapporteerde een psychosociale hulpbehoefte. De HSCL-25 identificeerde meer patiënten met een hulpbehoefte dan de CCQ Mentale Toestand (χ2=9.41, p<.002), wat in lijn was met onze verwachtingen. Patiënten met een hulpbehoefte waren iets jonger dan patiënten zonder een hulpbehoefte (t=4.48, p<001). Er werden geen verschillen gevonden voor sekse, FEV1, FEV1%voorspeld of medische co-morbiditeiten. We concludeerden dat er vraagtekens moeten worden gezet bij stress-screening als methode om patiënten te identificeren die een psychosociale hulpbehoefte hebben. Hoewel de HSCL-25 meer patiënten identificeerde dan de CCQ Mentale Toestand subschaal, werden niet alle patiënten geïdentificeerd. Een verband tussen stress en een behoefte aan psychosociale hulp moet zeker niet als een vaststaand gegeven worden beschouwd. Er is meer onderzoek nodig om in kaart te brengen of mediatoren of moderatoren een rol spelen bij stress in relatie tot een hulpbehoefte. Verder dienen alternatieve methoden te worden onderzocht waarmee patiënten kunnen worden geïdentificeerd die een hulpbehoefte hebben. In hoofdstuk 6 staan we stil bij de problemen die we tegenkwamen in ons onderzoek naar een psychologische behandeling. Hoewel we veel aandacht hebben besteed aan het benaderen en motiveren van patiënten, ondervonden we serieuze problemen met betrekking tot inclusie en uitval. Meer dan 400 klinische en poliklinische patiënten van het Universitair Medisch Centrum Groningen en het Martini Ziekenhuis Groningen werden benaderd door een onderzoeksassistent. Slechts 46 patiënten (57% van de geïnteresseerden) werden gerandomiseerd en toegewezen aan de behandelconditie (n= 25) of de controle conditie (n=21). Dit aantal was fors lager dan het aantal dat we nodig hadden (n=160) om de effectiviteit van de behandeling te onderzoeken. Slechts 32% (n= 8) werd uiteindelijk volgens protocol behandeld en 29% (n=6) viel uit bij de controle conditie. Het totale percentage van uitvallers was 50%. Het was niet mogelijk om te rapporteren over de effectiviteit van de behandeling en daarom reflecteren we in hoofdstuk 6 op de problemen en geven aanbevelingen voor toekomstig onderzoek naar psychologische behandelingen. We concluderen dat het includeren van patiënten bij psychologische behandelstudies nog moeilijker is dan we dachten. Bij nader inzien hadden we op voorhand de kennis en inzichten van patiënten met betrekking tot hun ziekte, hun percepties ten aanzien van fysieke en praktische barrières en cognities over psychosociale zorg, eventuele ziektevermijding, obstakels bij het bespreken van psychologische problemen en zelfbewuste emoties in kaart moeten brengen. Met betrekking tot de uitval concluderen we dat we expliciet hadden moeten

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nagaan, voorafgaand aan de start van de behandeling, of de doelen van de behandeling duidelijk voor hen waren en in overeenstemming met hun behoeften. We suggereren dat in toekomstig onderzoek patiënten participatie wordt overwogen als een manier om bepaalde problemen te ondervangen. In hoofdstuk 7 presenteren we ons protocol van een cognitief-experiëntiële behandeling. We beschrijven de rationale van de behandeling en een handleiding voor psychologen. De behandeling heeft tot doel om patiënten te leren meer controle te krijgen over; a) de fysieke consequenties/symptomen van de ziekte, b) emoties en percepties met betrekking tot de ziekte en c) de consequenties met betrekking tot relaties. Cognitieve en proces-experiëntiële technieken zijn gekozen om deze doelen te realiseren. De belangrijkste bevindingen van dit proefschrift worden gepresenteerd en bediscussieerd in hoofdstuk 8 en gerelateerd aan recent onderzoek. Verder worden methodologische overwegingen, klinische implicaties en aanbevelingen voor toekomstig onderzoek besproken. Concluderend werpt dit proefschrift enig licht op bepaalde aspecten van de fysieke en psychologische impact van COPD. Echter, er moet nog veel werk verzet worden en hopelijk draagt dit proefschrift bij aan toekomstig onderzoek naar de psychologie van COPD. Het onderzoek dat wordt besproken in dit proefschrift benadrukt eens te meer dat COPD moet worden behandeld als een bio-psycho-sociale ziekte.

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About the authorGemma Maters (1980) received her Master’s degree in Clinical Psychology at the University of Groningen in 2004. Subsequently she worked for several years as a psychologist in primary care and started with the PhD project in 2007, at the department of Health Psychology, University Medical Center Groningen, The Netherlands. She combined working on this thesis with a postdoctoral training and received her registration as a Healthcare Psychologist (Gezondheidszorgpsycholoog) in 2012. In 2013 she started working as a healthcare psychologist in a rehabilitation center. After the birth of her youngest child, in 2014, she continued to work on this thesis. She is currently working as a medical psychologist at the department of Medical Psychology of the Isala Hospital and as a lecturer at the Specialty Training for General Practice of the University Medical Center Groningen.

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DankwoordHet was een lange en leerzame reis. Het begon allemaal bij mijn schoonmoeder. Ze heeft jarenlang geworsteld met de ziekte COPD, voordat ze overleed in 2006. Haar strijd was één van de redenen om in 2007 te solliciteren naar de functie van promovendus binnen het UMCG. Ik wilde iets bijdragen aan het welzijn van mensen met COPD. Tijdens mijn reis ben ik veel mensen tegengekomen die ik dank verschuldigd ben. Allereerst de patiënten die mee hebben gedaan aan het onderzoek. Dank voor jullie openheid. Daarnaast wil ik mijn begeleiders en medeauteurs bedanken. Prof. dr Robbert Sanderman, je aanhoudend optimisme en de manier waarop je alles in een breder perspectief plaatst zijn inspirerend. Dr. Johan Wempe, ik bewonder je grote betrokkenheid bij je patiënten en je energie. Dr. Grieteke Pool, dank voor je kritische blik; door jou ben ik nog meer gaan beseffen dat iedere therapeutische interventie weloverwogen dient plaats te vinden. Dr. Joke Fleer, je pragmatische insteek is relativerend, dank daarvoor. Professor Jim Coyne, thank you for the opportunity to work together, visit you in Philadelphia and learn a lot from you. Dr. Aimee Yuka Kim, PhD, thank you for your contribution to the “HADS paper” and for taking me all around wonderful Philadelphia. Dr. Niels de Voogd, dank voor je goede ideeën en steunende woorden. Prof. dr Mariët Hagedoorn, dank voor de fijne samenwerking en je zorgvuldigheid. Dr. Evelien Snippe, dank voor je gedegen onderzoek en enthousiasme. Ook wil ik Titia Klemmeijer-Boekhout bedanken; fijn dat je me wegwijs wilde maken in het Martini Ziekenhuis Groningen en de screening van patiënten met COPD hebt begeleid. Dank aan alle psychologen die hebben meegedacht bij het schrijven van het behandelprotocol, of die de behandelingen hebben uitgevoerd: Wendelien Bohmers, Manon Wolters, Bertus Faber, Corinne van Scheppingen, Carina Koops, Torben Schulz, Kim van der Schoot, Floor Paulissen en Verona Otten. Ook heb ik ten tijde van het onderzoek een aantal studenten begeleid bij het schrijven van hun these, waarbij zij een bijdrage leverden aan de totstandkoming van dit proefschrift. Bedankt daarvoor: Evelien Snippe, Maaike Verburg, Kars van de Broek, Francien Kemper, Kirsten de Kok, Alieke Hulsink, Suzanne Hendriks, Nicole Mayer, Mirjam Lammers, Marga Tjallingii en Marijke Schaap-Oostingh. Ook heeft een aantal student-assistenten en aios geholpen met dataverzameling en dataverwerking ten behoeve van dit onderzoek. Bedankt Bernadetto Romano, Marleen Beelen, Vanessa Riethmeister en Kris Wijma. Verder dank aan alle oud-collega’s van de afdeling Health Psychology, voor de hulp en gezelligheid. In het bijzonder bedank ik Ans Smink, Truus van Ittersum, Annemieke Brouwers, Eric van Sonderen, Renate Kroese, Maya Schroevers, Adelita Ranchor en Corinne van Scheppingen. Mijn huidige collega’s van de afdeling Medische Psychologie van Isala, locaties Zwolle en Meppel, bedank ik voor de mogelijkheid onbetaald verlof op te nemen, zodat ik de kans kreeg dit proefschrift af te ronden. Voor de mooie vormgeving van dit proefschrift bedank ik Bianca Pijl. Tot slot, lieve familie en vrienden, heel erg bedankt voor de opbeurende woorden en het aanhoren van mijn frustraties. Paranimfen, Sandra en Charlotte, wat fijn dat jullie mijn steun en toeverlaat willen zijn bij de promotie. Lieve Marcel, zonder jou was dit proefschrift er niet geweest. Dank voor de ruimte die ik van je kreeg om er aan te werken; je hebt me altijd gesteund. Lieve dochters, Roosmarijn en Veerle, wat kijk ik er naar uit meer tijd te hebben om leuke dingen met jullie te ondernemen, nu dit proefschrift eindelijk af is.

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SHARE- previous dissertationsThis thesis is published within the Research Institute SHARE (Science in Healthy Ageing and healthcaRE) of the University Medical Center Groningen / University of Groningen. Further information regarding the institute and its research can be obtained from our internet site: http://www.share.umcg.nl/

More recent theses can be found in the list below. ((co-) supervisors are between brackets)

2018

Dammen L vanWomen’s health and wellbeing: the roles of early life adversity, stress and lifestyle(prof A Hoek, prof TJ Rosenboom, dr H Groen, dr SR de Rooij)

Dorland-Pel HFWork functioning in cancer patients: looking beyond return to work(prof U Bültmann, prof AV Ranchor, dr FI Abma, dr CAM Roelen)

Simoons MSomatic monitoring of patients with mood and anxiety disorders; problem definition, implementation and further explorations(prof EN van Roon, prof RA Schoevers, dr H Mulder, dr HG Ruhé)

Bouma AJThe barrier-belief approach; a new perspective of changing behavior in primary care(prof RL Diercks, prof A Dijkstra, prof CP van Wilgen)

Looijmans ALifestyle interventions in patients with a severe mental illness; addressing self- management and living environment to improve health(prof RA Schoevers, prof RP Stolk, dr F Jörg, dr E Corpeleijn)

Phí XABreast cancer screening in women at elevated risk; comparative evaluation of screening modalities to inform practice(prof GH de Bock, prof N Houssami, dr MJW Greuter)

Kooiman TJMThe use of self-tracking technology for health(prof CP van der Schans, dr M de Groot, dr A Kooy)

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Schulz TAdjustment to kidney transplantation; predictors of perceived health and psychological distress(prof AV Ranchor, prof RJ Ploeg, prof JJ Homan-van der Heide, dr J Niesing) Verburg PEPregnancy outcome in South Australia; population and cohort studies(prof JJHM Erwich, prof GA Dekker, prof CT Roberts)

Krops LAPhysical activity in hard-to-reach physically disabled people; development, implementation and effectiveness of a community-based intervention(prof JHB Geertzen, prof PU Dijkstra, dr R Dekker)

Golenia LA new perspective on the development of motor variability during middle childhood(prof E Otten, dr MM Schoemaker, dr RM Bongers)

Bebber J vanComputerized adaptive testing in primary care: CATja(prof RR Meijer, dr JTW Wardenaar-Wigman, dr A Wunderink)

Drenth JCMotor function, paratonia and glycation cross-linked in older people; motor function decline and paratonia and their relation with Advanced Glycation End-products (prof CP van der Schans, prof SU Zuidema, prof I Bautmans, dr JSM Hobbelen)

Selivanova AHealth-state valuation using discrete choice models(prof E Buskens, dr PFM Krabbe)

Boxum AGPostural control and reaching throughout infancy - in cerebral palsy and in typical development(prof M. Hadders-Algra, dr HA Reinders-Messelink, dr S la Bastide-van Gemert)

Kopcakova JPhysical activity, screen-based activities and their potential determinants; active living during adolescence(prof SA Reijneveld, prof A Madarasova-Geckova, dr JP van Dijk, dr Z Dankulincova-Veselska)

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Badura PHealthy adolescence in the context of leisure time: The role of organized and unstructured leisure-time activities(prof SA Reijneveld, dr JP van Dijk, dr D Sigmundova)

Cecilio Fernandes DKnowledge and skills acquisition in medical students; exploring aspects of the curriculum(prof ADC Jaarsma, dr F Cnossen, dr RA Tio)

For more 2018 and earlier theses visit our website

General discussion

university of groningen lungs under a cloud maters, gemma · 2019. 2. 4. · lungs under a cloud...

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