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Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study

Journal: BMJ Open

Manuscript ID bmjopen-2016-015023

Article Type: Research

Date Submitted by the Author: 10-Nov-2016

Complete List of Authors: Schakel, Wouter; VU University Medical Centre, Department of Ophthalmology and EMGO+ Institute for Health and Care Research (EMGO+) Bode, Christina; University of Twente, Department of Psychology, Health and Technology van der Aa, Hilde; VU University Medical Centre, Department of Ophthalmology and EMGO+ Institute for Health and Care Research (EMGO+)

Hulshof, Carel; Academic Medical Centre, University of Amsterdam, Coronel Institute of Occupational Health Bosmans, J; VU University Amsterdam, Department of Health Sciences and EMGO+ Institute for Health and Care Research, Faculty of Earth and Life Sciences van Rens, Ger; VU University Medical Centre, Department of Ophthalmology and EMGO+ Institute for Health and Care Research (EMGO+); Elkerliek Ziekenhuis, Department of Ophthalmology van Nispen, Ruth; VU University Medical Centre, Department of Ophthalmology and EMGO+ Institute for Health and Care Research (EMGO+)

Primary Subject Heading:

Qualitative research

Secondary Subject Heading: Ophthalmology

Keywords: Low vision, Fatigue, Patient's perspective, QUALITATIVE RESEARCH, Quality of Life

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Exploring the patient perspective of fatigue in adults with visual impairment: a

qualitative study

Wouter Schakel1, Christina Bode

2, Hilde P.A. van der Aa

1, Carel T.J. Hulshof

3, Judith E. Bosmans

4, Gerardus

H.M.B. van Rens1,5

, Ruth M.A. van Nispen1

Author affiliations:

1 Department of Ophthalmology, VU University Medical Centre, EMGO+ Institute for Health and Care Research,

Amsterdam, The Netherlands

2 Department of Psychology, Health & Technology, University of Twente, Enschede, The Netherlands

3 Coronel Institute of Occupational Health, Academic Medical Center, University of Amsterdam, Amsterdam, The

Netherlands

4 Department of Health Sciences and EMGO+ Institute for Health and Care Research, Faculty of Earth and Life

Sciences, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands

5 Department of Ophthalmology, Elkerliek Hospital, Helmond, The Netherlands

Corresponding author:

Wouter Schakel, MSc

Email: [email protected]

VU University Medical Centre PK4X187

PO Box 7700

1000 SN Amsterdam

Tel: +31-20-4444795

Fax: +31-20-4444745

Word count (excluding title page, abstract, references, figures and tables): 4491

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ABSTRACT

Objectives: Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study

explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue,

causes, consequences and coping strategies.

Setting: Two large Dutch low vision multidisciplinary rehabilitation organizations.

Participants: 16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling.

Methods: A qualitative study involving semi-structured interviews. A total of four first level codes were top-down

predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were

analysed with a combination of a deductive and inductive approach using open- and axial coding.

Results

Participants often described the symptoms of fatigue as a mental, daily and physical experience. The most often

mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high effort

necessary to establish visual perception, difficulty with light intensity and disturbed emotion regulation. Fatigue

had the greatest impact on the ability to carry out social roles and participation, emotional functioning and

cognitive functioning. The most common coping strategies were relaxation, external support, socializing and

physical exercise and the acceptance of fatigue.

Conclusions

Our results indicate that low vision related fatigue is mainly caused by population specific determinants that seem

different from the fatigue experience described in studies with other patient populations. Fatigue may be central to

the way patients react, adapt and compensate to the consequences of vision loss. These findings indicate a need

for future research aimed at interventions specifically tailored to the unique aspects of fatigue related to vision

loss.

STRENGTHS AND LIMITATIONS OF THIS STUDY

� This qualitative study provides an in-depth exploration of the patient perspective of fatigue in visually

impaired adults regarding symptoms of fatigue, causes, consequences and coping strategies.

� Participants were selected from two Dutch low vision multidisciplinary rehabilitation centres through

purposive sampling to reflect a range of demographic characteristics (gender, age and work status) and

disease characteristics (ophthalmic diagnosis, visual acuity, visual field and disease duration).

� Participant’s symptoms of self-reported fatigue were checked with a well validated instrument to assess

fatigue severity.

� A random selection of 10% of the citations was matched to the existing coding scheme independently by

the second author in order to improve reliability of the coding process.

� Limitations include the relatively small sample size and the relatively young age and high amount of rare

eye conditions in our sample which may limit the transferability of the findings to the total population of

visually impaired adults.

KEYWORDS

Low vision · Fatigue · Patient’s perspective · Quality of life · Qualitative research

INTRODUCTION

Fatigue is an often mentioned complaint by patients with irreversible visual impairment. In fact, they have

prioritized fatigue in the top 5 of problems with the highest rehabilitation urgency[1]. However, low vision

professionals are at a loss how to deal effectively with fatigue because currently no evidence-based treatment

options are available. Previous research on fatigue in visually impaired patients is often limited to patient

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populations in which fatigue or feelings of exhaustion is a known symptom[2-4]. Only few studies assessed the

relation between fatigue and visual impairment. Mojon-Azzi et al. (2006) found that a greater impairment of vision

is associated with a higher probability of feeling fatigued[5]. Similar results have been reported in The Blue

Mountains Eye Study by Chia et al. (2004). In their population-based study, irreversible visual impairment (due to

various eye conditions) was associated with increased fatigue when compared to participants without visual

impairment and correctable visual impairment[6].

Symptoms of fatigue have been found to have a negative impact on psychological wellbeing, quality of

life (QoL), employment and work related activities among patients with chronic disease[7-13]. Similar results have

been reported with respect to the consequences of fatigue in patients with vision loss. In the study of Bruijning et

al. (2010), consequences of fatigue mentioned by visually impaired patients included difficulty maintaining energy

to endure daily activities (e.g. running errands, cooking and work), difficulty concentrating and processing or

memorizing information, crossing one’s personal boundaries regarding energy balance and requiring extra effort

to perceive and process visual stimuli[14].

Studies have shown that fatigue is related specific to underlying disease mechanisms in different patient

populations[10 15 16]. Fatigue in visual impairment might be related to the difficulty of processing visual stimuli

which may require more concentration and may result in eye strain. An association between fatigue and sleep

related problems has been mentioned in visually impaired patients with some remaining vision[17-19], and in blind

patients because of the disturbance in circadian rhythms[20]. The positive effect of physical activity on reduction

of fatigue[21] may be difficult to achieve in visually impaired adults because they engage in less physical activity

compared to persons without vision loss[22]. Symptoms of fatigue may also be related to psychological factors,

considering the high prevalence of symptoms of depression and anxiety in persons with visual impairment[23] and

the well-known association between fatigue and depression[10].

To our knowledge, coping strategies to deal with fatigue have not yet been studied in visually impaired

adults. In rheumatoid arthritis it was shown that patients managed fatigue alone without support from healthcare

professionals by pacing and rest, relaxation and acceptance[24]. Rest and sleep were also described to relieve

fatigue for patients with ankylosing spondylitis (AS), fibromyalgia (FM), stroke and multiple sclerosis (MS)[25]. In

addition, these patients tried to avoid stress and adjusted their activity levels to fit with their reduced capacity[25].

Given the high rehabilitation urgency of fatigue in low vision[1] and the expected increase in the

prevalence of people with visual impairment due to an aging society[26], further research is crucial to better

understand the etiology of fatigue in this population in order to develop new treatments. In this context, it is

important to understand the concept of fatigue as experienced by the patient because of its subjective and

multifactorial nature. According to Leventhal’s theory of self-regulation, patients have beliefs and cognitive

representations about their illness through illness perceptions[27]. These representations are an important

determinant of behavior and can have an impact on the way patients cope with their illness[28]. Understanding

these cognitive representations can give insights into the emotional responses to illness which could influence the

perceived severity or consequences of fatigue in people with low vision. Qualitative research methods allow an in-

depth exploration of subjective symptoms such as the experience of fatigue. The aim of this qualitative study is,

therefore, to explore the patient perspective of perceived symptoms, causes, consequences and coping strategies

to deal with fatigue in a sample of Dutch visually impaired patients (≥ 18 years).

METHODS

Design & participants

Patients aged 18 years or older registered at two large Dutch low vision rehabilitation organizations were invited

to participate in this study. Patients can be referred to these centres based on criteria described in the Dutch

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guideline “Vision disorders, rehabilitation and referral”[29] that mainly follow the World Health Organization (WHO)

criteria, where low vision is defined as the best corrected visual acuity in the better eye of


4

resulting in data of 16 patients. At this point, no further interviews were conducted because of data saturation. The

characteristics of the 16 participants are shown in table 1.

The majority of participants were male, lived together with a partner and had no comorbidity. The

average age of the participants reflected a middle-aged sample, but only a minority was still employed. Vision loss

was caused by relatively rare eye diseases, with retinitis pigmentosa as the most frequently reported primary

diagnosis. Cataract was present in two participants in addition to their primary cause of visual impairment. The

FAS questionnaire showed a fatigue prevalence of 88% (FAS ≥ 22), indicating that the inclusion criterion of self-

reported fatigue was reflected by the FAS for almost the entire sample. A relatively large proportion of patients

(38%) had moderate to (moderately) severe symptoms of depression (PHQ-9 ≥ 10).

Table 1 · Demographic characteristics of the study population (n = 16)

N (%) Observed range

Gender

Female 7 (44)

Male (56)

Age in years [mean ± SDa] 51 ± 13 30-77

Work status

Occupational disability 6 (38)

Voluntary work 5 (31)

Employed 4 (25)

Retired 1 (6)

Marital status, living together 11 (69)

Primary cause of visual impairment

Retinitis pigmentosa 4 (25)

Glaucoma 2 (13)

Ablatio retinae 2 (13)

Neurosarcoidosis 1 (6)

Congenital cataract 1 (6)

Usher syndrome 1 (6)

Ocular albinism 1 (6)

Retinoblastoma 1 (6)

Leber congenital amaurosis 1 (6)

Choroideremia 1 (6)

Diabetic retinopathy 1 (6)

Time since diagnosis in years [mean ± SD] 18 ± 15 1-49

Comorbid diseases 0-4

0 10 (63)

≥ 1 6 (37)

Fatigue severity

FASb [mean ± SD] 29 ± 7 16-46

Fatigued (FAS ≥ 22) [n (%)] 16 (88)

Vision-related fatigue [mean ± SD] 15 ± 5 9-28

Depressive symptoms

PHQ-9c [mean ± SD] 8 ± 4 3-17

Moderate/severe symptoms (PHQ-9 ≥ 10) [n (%)] 6 (38)

aSD: standard deviation;

bFAS: Fatigue Assessment scale;

cPHQ-9: Patient Health Questionnaire

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Qualitative findings

First level codes and common categories of the experience of fatigue related to visual impairment can be found in

Table 2. Supporting citations for the larger common categories (n ≥10) are provided in the paragraphs below.

Table 2 · Main findings regarding fatigue: common categories

First level code Common categories N

Experienced symptoms of fatigue Mental 13

Everyday symptom 11

Physical 9

Uncontrollable and unpredictable 6

Need to sleep 5

Perceived causes of fatigue High cognitive load 15

Activities; amount and intensity 13

Effort for visual perception 11

Difficulty with light intensity 10

Dysfunctional emotion regulation 10

Comorbidity 6

Mobility 5

Perceived consequences of fatigue Emotional functioning 15

Social roles and participation 15

Cognitive functioning 14

Daily activities 8

Leisure activities 4

Visual functioning 2

Coping strategies with fatigue Relaxation 14

External support 12

Socializing and physical exercise 11

Acceptance of fatigue 10

Limiting visual perception 7

Balancing activities and relaxation 6

Na: Number of participants to describe each common category

Experienced symptoms of fatigue

The majority of the participants described fatigue as both a ‘mental and physical experience’, with feelings of

heaviness, languidness and inertia.

“You get a little cranky when you’re tired, a little apathetic and all, but I feel it in my eyes, and yes,

sometimes also in my body. It’s just everywhere.” (Female, 41 years, ocular albinism).

Only a few participants reported solely ‘physical’ or ‘mental’ elements of fatigue.

“The feeling that you don’t have muscles anymore, that it’s just pudding, just super weak.” (Male, 55

years, glaucoma). “Fatigue is an intense feeling with a heavy sensation in my head. As if I’m no longer

able to cope with anything.” (Male, 30 years, congenital cataract).

Symptoms of fatigue were reported to be ‘present on a daily basis’ by more than half of the participants. Several

participants also described fatigue as an ‘uncontrollable and unpredictable’ experience. Almost a third of the

participants described their fatigue as ‘a need to sleep’. A great variability existed with regard to fatigue

expectations, patterns, frequency and severity.

Perceived causes of fatigue

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Almost all participants considered ‘a high cognitive load’ as a result of their visual impairment the cause of their

fatigue. A variety of cognitive processes that require more energy or resources due to the loss of vision are

reported, such as memorizing information, processing (auditory) information, paying attention to the environment,

and orientation in the surrounding environment.

“You’re getting fatigued because you’re in a constant state of processing stimuli, that’s pretty exhausting.

It’s really difficult to filter out the right kind of information, sometimes everything is crowding in on you.”

(Female, 58 years, Leber congenital amaurosis).

For the majority of the participants, fatigue depended on the ‘amount and intensity of actions and activities’.

“Well, performing a daily activity that doesn’t go as smoothly as you want, because you aren’t able to

see, really makes you tired.” (Male, 49 years, choroideremia).

More than half of the participants with some remaining vision related the cause of their fatigue to the ‘high effort to

establish visual perception’. For these participants, more energy is required for focus and accommodation of the

eye in order to perceive visual stimuli.

“So your eye is constantly trying to focus, trying to get a sharp image which cannot be obtained. That's

really tiresome, it's like a camera making the zzzzzzzz noise when it can't find a point of focus.” (Female,

41 years, Ocular albinism).

The ‘intensity of light’ was also considered as a contributing cause to their fatigue by more than half of the

participants. The majority of these participants experienced severe symptoms of fatigue in the absence of light

(e.g. at dusk), as opposed to some participants who felt more fatigued when exposed to too much light.

“For me it’s also exhausting whenever it gets dark. It’s as if you end up in an introverted state which

requires more energy to snap out of.” (Female, 54 years, diabetic retinopathy).

For the majority of the participants fatigue was at least partly caused by ‘dysfunctional emotion regulation’, such

as crossing boundaries regarding energy levels, negative thoughts related to vision loss, feelings of inferiority and

frustration.

“What also comes into play for me are my negative thoughts about my visual impairment. Like what

would other people think whenever I’m walking around with my white cane? Those thoughts take an

awful lot of energy as well.” (Male, 30 years, congenital cataract).

Some participants mentioned ‘mobility’ (e.g. travelling, public transport) and ‘co-morbidity’ as a possible cause of

their fatigue.

Experienced consequences of fatigue

Almost all participants reported that fatigue had consequences on ‘emotional functioning’; they mentioned

frustration, irritability, negative mood and personality changes.

“Well, I become gloomy whenever I’m really tired and I start overestimating my own responsibilities, even

though they aren’t my own responsibilities at all sometimes.” (Female, 54 years, diabetic retinopathy).

In addition, some participants mentioned that fatigue diminishes their emotion regulating capacities.

“The fact is, however, that you have less reserves when you’re tired, reserves for coping with certain

emotions at that moment.” (Female, 44 years, retinitis pigmentosa).

Negative consequences of fatigue on ‘social roles and participation’ was reported by almost all participants as

well; it limits social activities and work and causes patients to feel excluded from society.

“Because of my fatigue I’m no longer able to participate in society.” (Female, 38 years, Usher syndrome).

The majority of the participants described a major influence of fatigue on ‘cognitive functioning, particularly on

concentration, attention and memory.

“I find it extremely difficult to really focus on what another is saying in a company, I just let it slide when

I’m tired” (Female, 77 years, retinitis pigmentosa).

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Half of the participants described the consequences of fatigue on ‘daily activities’, such as household chores,

cooking and, administration. Some participants mentioned ‘withdrawing from leisure activities’ as a consequence

of fatigue. Only a few participants reported reduced vision when experiencing fatigue.

Coping strategies with fatigue

Almost all participants mentioned ‘relaxation’ as a coping strategy in order te reduce fatigue. A variation of

relaxation activities were reported, such as napping, postponing or cancelling activities, listening to music, taking

short breaks or going to bed early.

“I take a nap almost every day. Well napping.., you just want to rest, to close your eyes for a while..”

(Male, 42 years, glaucoma).

The majority of the participants reached out for external support of family and friends and professional advice

from low vision rehabilitation centres.

“I’ve been to the rehabilitation centre for a couple of years at some time in the past, and this certainly

contributed to the process of accepting my fatigue.” (Female, 58 years, Leber congenital amaurosis).

More than half of the participants described the positive effect of ‘socializing and physical exercise’. Even though

these kind of activities require energy, participants prioritise the positive feeling of achievement over fatigue.

“Some activities require tons of energy, sports for example, or going with mates to the pub or a birthday

party. But seeing my friends and family is way more valuable than the feeling of being tired. The fact I

have to take it easy for a couple of days afterwards is something you’re happy to give in to.” (Male, 39

years, retinitis pigmentosa).

Some participants also mentioned gaining energy by being active and participating in social activities.

“I like to be physically active. I just like to go for a walk or go cycling, I also really enjoy drinking a beer

with my friends, it gives me energy.” (Female, 38 years, Usher syndrome).

More than half of the participants indicated they had accepted their fatigue.

“Fatigue is just there, and at some point there is a lot of acceptance. You also adjust your life accordingly

to it, you could view fatigue as an enemy but you can also choose to deal with it. That would make it

more difficult because fighting against it won’t help me anyway.” (Female, 58 years, Leber congenital

amaurosis).

Half of the participants also described ‘limiting visual perception’ as a successful coping strategy to deal with

fatigue, by using visual aids (e.g. filter glasses, braille display, text to speech conversion), performing activities

with closed eyes and limiting exposure to light. A third of the participants tried to ‘create a balance in activities and

relaxation’ in order to cope with fatigue.

DISCUSSION

In this qualitative study, the patient’s perspective of fatigue was explored in visually impaired adults regarding

symptoms of fatigue, causes, consequences and coping strategies. Fatigue is described as a mental, but also as

a physical daily experience, that has consequences for social roles and participation, relationships, and emotional

and cognitive functioning. The most frequently reported coping strategies for fatigue are relaxation, seeking

external support, socializing, physical activities and acceptance.

Compared to the experience of fatigue described in studies with other patient populations, our results

show specific causes of fatigue that are related to vision loss. The most often reported cause of fatigue in our

sample was high cognitive load; a finding similar to fatigue in hearing loss[38 39] but not reported before in other

patient populations[9 24 40 41]. Therefore, a high cognitive load may be a specific cause of fatigue for sensory

impairments. Compensation for vision loss may result in a high cognitive load due to the necessary adjustments

required in order to maintain daily functioning. In these patients’ experience, processes or activities that are

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automatic or habitual now require preparation, mental planning and attention. Patients also describe that they

process information in a different way: the loss of visual information is compensated by visual imagery, auditory

perception and the constant process of memorizing information. This suggests that adaptation to vision loss can

be an indirect cause of fatigue because practical solutions such as text-to-speech devices are highly demanding

for other sensory modalities. Patients and low vision professionals should be aware of this, because fatigue can

be a side-effect of rehabilitation interventions to optimize participation. Thus, low vision rehabilitation

professionals should make sure that new practical interventions do not exceed the available energy capacity of

the patient. Enforcing boundaries and adjusting pacing strategies may be key factors in this process.

The effort required for visual perception was another population specific cause of fatigue commonly

mentioned by respondents in this study. Patients described visual demanding tasks such as reading or display

work are tiresome in particular. Possible explanations for this might be that persons with low vision require more

energy necessary for focus, strain and accommodation of the eye in order to establish visual perception. These

findings suggest that practical interventions limiting visual perception would be likely to reduce symptoms of

fatigue among individuals with low vision. This is in line with our results regarding coping strategies, where some

participants described the beneficial effect of performing activities with closed eyes. In addition, our study

produced new insights in the association between fatigue and light sensitivity; a study among stroke patients

briefly mentioned this aspect before[25]. Increasing lighting conditions for people with vision loss improves

activities of daily living and quality of life[42], and may also decrease symptoms of fatigue.

Our results show that dysfunctional emotional functioning plays a large role in fatigue in visually impaired

adults. Descriptions of distress related to vision loss include frustration, embarrassment, insecurity and feelings

of inferiority, consistent with previous qualitative studies among visually impaired patients[43-45]. Vision-specific

distress is strongly associated with depression and the impact of visual impairments on everyday activities and

functioning[46]. We found a relatively high proportion of depressive symptoms in our sample (38%), which is in

line with previous research[23 47]. Interestingly, the majority of the respondents also mentioned emotional

dysfunctioning as a consequence of fatigue. This is in line with the fact that participants struggled with

distinguishing causes from consequences of fatigue. A possible explanation for this may be that fatigue is circular

from nature, in which consequences of fatigue may lead to emotional problems, which in turn could perpetuate

fatigue. Cognitive behavioural therapy and physical therapy have proven to be beneficial for fatigue in some

patient populations with chronic disease[48-51]. However, the question remains whether these treatment options

will also be beneficial for our study population considering the specific causes of fatigue in this low vision

population.

Consistent with a previous qualitative study in patients with low vision[14] and qualitative studies in other

patient populations[25 52], we found that fatigue has a negative impact on emotional functioning, the ability to

carry out roles, societal participation, cognition and daily activities. It is also noteworthy that patients are quite

capable of accurately describing their different coping strategies to deal with fatigue. Relaxation, external support,

socializing, physical exercise and acceptance of fatigue were identified as important coping strategies. They

seemed well educated and actively used rehabilitation services and their own resources to move forward in their

coping process with fatigue. However, until now these coping strategies do not seem to be sufficient because

fatigue still remains a problem for these patients.

Strengths and limitations Some strengths of the study are the use of a well validated instrument to assess

fatigue severity, which indicated that almost all participants in our sample can be categorized as severely

fatigued. Furthermore, our sample consisted of a heterogeneous group with a great variation in gender, work

status, visual acuity, visual field and disease duration. Ten percent of the citations was matched to the existing

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coding scheme independently by another researcher, who agreed in 84% of the categorizations; 16% was

resolved by discussion.

There are some limitations that should be mentioned. First of all, the study consisted of a relatively small sample

size. However, these sample sizes are common in qualitative studies, and saturation was reached. Our sample

was relatively young with a relatively rare eye-conditions compared to the total population of visually impaired

people. This could influence generalizability of the results, especially to older patients who are often faced with

age-related causes of vision loss such as macular degeneration. However, the various eye diseases which were

the causes of vision loss in the current sample did not seem to influence the experience of fatigue. In future

research, the possible relation between various eye conditions and fatigue should be examined in detail by

quantitative methods. Additional research with quantitative methods is required to examine whether there is a

relation between eye conditions and fatigue.

Conclusion

Our study showed that fatigue was mainly caused by specific factors related to vision loss according to patients

with low vision and fatigue. Evaluation of the literature on the fatigue experience in other chronic illnesses

demonstrated similar symptoms, consequences and coping strategies, but different perceived causes. The

population specific determinants of fatigue in our study were a high cognitive load, the effort necessary for visual

perception, difficulty with light intensity and dysfunctional emotional functioning. Fatigue may be an indirect result

of compensation for vision loss because even in light of practical adjustments that are often made in daily life,

they often do not fully compensate vision loss and many activities may still require a high cognitive investment. In

addition, fatigue may be a result of emotional distress due to a maladaptive reaction to vision loss. These findings

indicate that fatigue in visually impaired adults may not be a direct result of underlying disease mechanisms, but

central to the way patients react and adapt to the consequences of vision loss. Future research is warranted

because evidence based interventions to deal with fatigue are lacking for low vision rehabilitation professionals,

and patient’s coping strategies appear to be insufficient to effectively deal with fatigue. Low vision professionals

and patients should be aware that necessary activities for optimizing participation can also have a negative

impact on fatigue.

FOOTNOTES

Author affiliations

1 Department of Ophthalmology, VU University Medical Centre, EMGO+ Institute for Health and Care Research,

Amsterdam, The Netherlands

2 Department of Psychology, Health & Technology, University of Twente, Enschede, The Netherlands

3 Coronel Institute of Occupational Health, Academic Medical Center, University of Amsterdam, Amsterdam, The

Netherlands

4 Department of Health Sciences and EMGO+ Institute for Health and Care Research, Faculty of Earth and Life

Sciences, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands

5 Department of Ophthalmology, Elkerliek Hospital, Helmond, The Netherlands

Acknowledgments

The authors thank all participants who agreed to be interviewed for this study and shared their experiences. They

would also like to thank the professionals from the low vision rehabilitation organisations Royal Dutch Visio and

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Bartiméus for their help with identifying potential participants and recruitment, and Fabian Herdes and Julia

Rickers for transcribing the interviews.

Contributors

The executive researcher (WS), project advisors (CB, HPAvA, CTJH and JEB), project leader (GHMBvR), and

principal investigator (RMAvN) conceived the study and it’s design. WS, CB and RMAvN adapted and developed

the interview scheme based on a qualitative study about the patient perspective on fatigue in patients with

rheumatoid arthritis. Data collection, analysis and interpretation was performed by WS, with support from CB and

RMAvN. WS drafted the manuscript, which was revised by the other authors (CB, HPAvdA, CTJH, JEB, GHMBvR

and RMAvN). All authors read and approved the final manuscript. GHMBvR is guarantor.

Funding

The findings of the qualitative study presented here are part of a larger research project on fatigue among visually

impaired adults. Financial support for this research project was provided by ‘ZonMw InZicht’, the Dutch

Organisation for Health Research and Development—InSight Society [Grant Number 60-0063598146], The

Hague, The Netherlands.

Competing interests

All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare:

no support from any organisation for the submitted work; no financial relationships with any organisations that

might have an interest in the submitted work in the previous three years; no other relationships or activities that

could appear to have influenced the submitted work.

Ethical approval

This study was approved by the Medical Ethics Committee of the VU University Medical Centre (Amsterdam, the

Netherlands) and has been performed in accordance with the ethical standards laid down in the 1964 Declaration

of Helsinki and its later amendments. All patients gave written consent to participate in the present study.

Data sharing

No additional data are available.

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10. Nikolaus S, Bode C, Taal E, van de Laar MA. Fatigue and factors related to fatigue in rheumatoid arthritis: a systematic review. Arthritis Care Res (Hoboken) 2013;65(7):1128-46 doi: 10.1002/acr.21949[published Online First: Epub Date]|.

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12. Mustian KM, Peppone LJ, Palesh OG, et al. Exercise and Cancer-related Fatigue. US Oncol 2009;5(2):20-23 13. Weijman I, Kant I, Swaen GM, et al. Diabetes, employment and fatigue-related complaints: a comparison

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15. Fritschi C, Quinn L. Fatigue in patients with diabetes: a review. Journal of psychosomatic research 2010;69(1):33-41 doi: 10.1016/j.jpsychores.2010.01.021[published Online First: Epub Date]|.

16. Newland P, Starkweather A, Sorenson M. Central fatigue in multiple sclerosis: a review of the literature. J Spinal Cord Med 2016:1-14 doi: 10.1080/10790268.2016.1168587[published Online First: Epub Date]|.

17. Asplund R. Sleep, health and visual impairment in the elderly. Arch Gerontol Geriatr 2000;30(1):7-15 18. Ramos AR, Wallace DM, Williams NJ, et al. Association between visual impairment and sleep duration:

analysis of the 2009 National Health Interview Survey (NHIS). BMC Ophthalmol 2014;14:115 doi: 10.1186/1471-2415-14-115[published Online First: Epub Date]|.

19. van Rijn KJ, Joosse MV, Kerkhof GA. A Survey of Sleep Disorders Among Dutch Visually Impaired Persons. Sleep-wake research in The Netherlands. Annual Proceedings of the NSWO. 2014;25:72-76

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24. Repping-Wuts H, Uitterhoeve R, van Riel P, van Achterberg T. Fatigue as experienced by patients with rheumatoid arthritis (RA): a qualitative study. Int J Nurs Stud 2008;45(7):995-1002 doi: 10.1016/j.ijnurstu.2007.06.007[published Online First: Epub Date]|.

25. Eilertsen G, Ormstad H, Kirkevold M, Mengshoel AM, Soderberg S, Olsson M. Similarities and differences in the experience of fatigue among people living with fibromyalgia, multiple sclerosis, ankylosing spondylitis and stroke. J Clin Nurs 2015;24(13-14):2023-34 doi: 10.1111/jocn.12774[published Online First: Epub Date]|.

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27. Leventhal H, Meyer D, Nerenz D. The common sense representation of illness danger. In: Rachman S, ed. Contributions to medical psychology. New York: NY: Pergamon Press, 1980:7-30.

28. Hagger M, Orbell S. A meta analytic review of the common sense model of illness representations. Psychology and Health 2003;18:141-84

29. van rens GHMB, Vreeken H, van Nispen RMA. Guideline vision disorders: Rehabilitation and referral Secondary Guideline vision disorders: Rehabilitation and referral [Internet] 2011. http://www.reponline.nl/uploads/hC/sf/hCsfyQHBvekdnF3fp-z2xw/Richtlijn-visusstoornissen-revalidatie-en-verwijzing.pdf.

30. Bode C, Hoek L, Köhle N. The impact of SLE-related fatigue: similar for patient and partners? 31. Michielsen HJ, De Vries J, Van Heck GL, Van de Vijver FJR, Sijtsma K. Examination of the dimensionality of

fatigue: The construction of the Fatigue Assessment Scale (FAS). European Journal of Psychological Assessment 2004;20:39-48

32. Bruijning JE, van Rens G, Fick M, Knol DL, van Nispen R. Longitudinal observation, evaluation and interpretation of coping with mental (emotional) health in low vision rehabilitation using the Dutch ICF Activity Inventory. Health and quality of life outcomes 2014;12:182

33. Zuithoff NP, Vergouwe Y, King M, et al. The Patient Health Questionnaire-9 for detection of major depressive disorder in primary care: consequences of current thresholds in a crosssectional study. BMC family practice 2010;11:98

34. f4transkript [program]. Marburg, 2015. 35. Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ

2000;320(7227):114-6 36. Boeije HR. Analysis in Qualitative Research. London: Sage Publications Ltd, 2010. 37. Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based

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39. Hornsby BW. The effects of hearing aid use on listening effort and mental fatigue associated with sustained speech processing demands. Ear Hear 2013;34(5):523-34 doi: 10.1097/AUD.0b013e31828003d8[published Online First: Epub Date]|.

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42. Brunnstrom G, Sorensen S, Alsterstad K, Sjostrand J. Quality of light and quality of life--the effect of lighting adaptation among people with low vision. Ophthalmic Physiol Opt 2004;24(4):274-80 doi: 10.1111/j.1475-1313.2004.00192.x[published Online First: Epub Date]|.

43. Wong EYH, Guymer RH, Hassell JB, Keeffe JE. The experience of age-related macular degeneration. J Vis Impair Blind 2004;98(10):629-40

44. De Leo D, Hickey PA, Meneghel G, Cantor CH. Blindness, fear of sight loss, and suicide. Psychosomatics 1999;40(4):339-44 doi: 10.1016/S0033-3182(99)71229-6[published Online First: Epub Date]|.

45. Teitelman J, Copolillo A. Psychosocial issues in older adults' adjustment to vision loss: findings from qualitative interviews and focus groups. Am J Occup Ther 2005;59(4):409-17

46. Rees G, Tee HW, Marella M, Fenwick E, Dirani M, Lamoureux EL. Vision-specific distress and depressive symptoms in people with vision impairment. Investigative ophthalmology & visual science 2010;51(6):2891-6 doi: 10.1167/iovs.09-5080[published Online First: Epub Date]|.

47. Huang CQ, Dong BR, Lu ZC, Yue JR, Liu QX. Chronic diseases and risk for depression in old age: a meta-analysis of published literature. Ageing Res Rev 2010;9(2):131-41 doi: 10.1016/j.arr.2009.05.005[published Online First: Epub Date]|.

48. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. The Cochrane database of systematic reviews 2016(6):CD003200 doi: 10.1002/14651858.CD003200.pub5[published Online First: Epub Date]|.

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50. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. The Cochrane database of systematic reviews 2008(3):CD001027

51. Cramp F, Byron-Daniel J. Exercise for the management of cancer-related fatigue in adults. The Cochrane database of systematic reviews 2012;11:CD006145 doi: 10.1002/14651858.CD006145.pub3[published Online First: Epub Date]|.

52. Bennett B, Goldstein D, Friedlander M, Hickie I, Lloyd A. The experience of cancer-related fatigue and chronic fatigue syndrome: a qualitative and comparative study. J Pain Symptom Manage 2007;34(2):126-35 doi: 10.1016/j.jpainsymman.2006.10.014[published Online First: Epub Date]|.

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APPENDIX 1: INTERVIEW SCHEME

Fatigue severity and the experience of fatigue

1. How would you describe the experience of fatigue, how does it feel?

2. To what extent do you suffer from fatigue?

3. How much energy do you have on a normal day?

4. When did the first symptoms of fatigue started to occur?

5. Has the experience of fatigue always been the same?

a. Did it change in the course of time?

b. When does fatigue affects you most or least?

(weekdays/weekend, morning/afternoon/evening)

6. What are your expectations of your fatigue in the future?

Causes of fatigue

1. What do you think causes the fatigue?

2. How does your visual impairment affect your fatigue?

a. Eye fatigue / concentration

b. Light perception

c. How does your visual impairment influences your daily activities?

3. I would like to ask you some questions related to the quality of your sleep.

a. On average, how many hours of sleep do you get per night?

b. Do you believe this is sufficient?

c. How would you rate the quality of your sleep?

i. How much trouble do you have falling asleep at night?

ii. How many times do you wake up at night?

iii. Do you have problems with waking up in the morning?

d. Do you nap during the day, if so, how frequently?

e. How would you describe your daily rhythm?

Consequences of fatigue

1. What are the consequences of fatigue?

a. Does fatigue have an impact on the ability of learning and applying knowledge?

b. Does fatigue affect general tasks and demands?

c. Does fatigue affect communication?

d. Does fatigue have an impact on mobility, indoor and outdoor activities or travelling with public

transport?

e. Does fatigue have an influence on self-care, such as personal hygiene, healthcare, medication

or eating and drinking?

f. Does fatigue have an impact on domestic life?

g. Does fatigue affects interpersonal relationships?

h. Does fatigue have an impact on community, social and civic life?

i. Does fatigue have an emotional impact on your life?

j. Does fatigue have an impact on your personality?

Coping with fatigue

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1. How do you cope with your fatigue?

2. Are you able to control your fatigue?

3. Does your fatigue increase when performing certain kind of activities?

4. What kind of activities have a positive effect on your fatigue?

5. What kind of activities mostly give you energy?

6. How did you learn to cope with fatigue?

a. Process of acceptance?

b. Professional support?

c. Social support?

7. Are you satisfied about the way you cope with your fatigue?

8. How does you social network react to your fatigue?

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Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist

Fatigue in adults with visual impairment: The patient perspective

Developed from: Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ):

a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007. Volume

19, Number 6: pp. 349 – 357

No Guide questions/description Reported on page #

Domain 1: Research

team and reflexivity

Personal

Characteristics

1. Interviewer/facilitator

Which author/s conducted the interview

or focus group?

Page 3. Wouter Schakel conducted all the

interviews.

2. Credentials

What were the researcher's

credentials? E.g. PhD, MD

Page 0 (Title page). BSc Psychology, &

MSc Neuropsychology

3. Occupation

What was their occupation at the time of

the study? Junior researcher

4. Gender Was the researcher male or female? Male

5. Experience and

training

What experience or training did the

researcher have?

The researcher has worked as a

neuropsychologist in a healthcare institute

and as neurofeedback trainer at the

University of Amsterdam prior to this study.

Relationship with

participants

6. Relationship

established

Was a relationship established prior to

study commencement?

WS knew some of the low vision

professionals who helped with the

recruitment of the patients, but did not

know the study participants beforehand.

7. Participant

knowledge of the

interviewer

What did the participants know about

the researcher? e.g. personal goals,

reasons for doing the research

Page 3. This information was provided by

letter to the interested patients. The

researcher repeated these goals before

the start of the interview.

8. Interviewer

characteristics

What characteristics were reported

about the interviewer/facilitator?

The interviewer introduced and stated that

he has a background in psychology and

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e.g. Bias, assumptions, reasons and

interests in the research topic

works as a junior researcher on a project

about fatigue in adult with visual

impairment.

Domain 2: study

design

Theoretical framework

9. Methodological

orientation and Theory

What methodological orientation was

stated to underpin the study? e.g.

grounded theory, discourse analysis,

ethnography, phenomenology, content

analysis Page 3. Framework method

Participant selection

10. Sampling

How were participants selected? e.g.

purposive, convenience, consecutive,

snowball Page 3. Purposive sampling

11. Method of

approach

How were participants approached?

e.g. face-to-face, telephone, mail, email

Patients registered at two Dutch low vision

rehabilitation organizations were invited by

low vision professionals, either face-to-face

or by email.

12. Sample size

How many participants were in the

study? Page 4. 17 patients participated.

13. Non-participation

How many people refused to participate

or dropped out? Reasons?

Page 4. Four patients initially showed

interest but did not respond after they

received the information letter . Data of one

participant was excluded due to treatment

for a psychiatric disorder (violation of

exclusion criteria).

Setting

14. Setting of data

collection

Where was the data collected? e.g.

home, clinic, workplace

Page 3. The interviews were conducted at

the patient’s home.

15. Presence of non-

participants

Was anyone else present besides the

participants and researchers? No

16. Description of

sample

What are the important characteristics

of the sample? e.g. demographic data,

Page 4. Gender, age, work status, marital

status, primary cause of visual impairment,

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date time since diagnosis, comorbid diseases,

fatigue severity and depressive symptoms.

Data collection

17. Interview guide

Were questions, prompts, guides

provided by the authors? Was it pilot

tested?

Page 3. An interview scheme was

developed beforehand by the research

team based on an interview scheme from

another study about the patient

perspective of fatigue in rheumatoid

arthritis.

18. Repeat interviews

Were repeat interviews carried out? If

yes, how many? No.

19. Audio/visual

recording

Did the research use audio or visual

recording to collect the data?

Page 3. All interviews were recorded by a

digital voice recorder. These recordings

were transcribed with F4 software by

Wouter Schakel with aid of interns.

20. Field notes

Were field notes made during and/or

after the interview or focus group? Yes.

21. Duration

What was the duration of the interviews

or focus group?

Page 3. The average duration of the

interviews was around 90 minutes.

22. Data saturation Was data saturation discussed?

Page 4. Yes, saturation was discussed

with Ruth van Nispen and Christina Bode.

23. Transcripts

returned

Were transcripts returned to participants

for comment and/or correction? No.

Domain 3: analysis

and findings

Data analysis

24. Number of data

coders How many data coders coded the data?

WS was responsible for the coding of the

data. CB assisted in the axial coding

process of four interviews. RvN

independently matched a random selection

of 10% of the citations to the coding

scheme.

25. Description of the

coding tree

Did authors provide a description of the

coding tree? No.

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26. Derivation of

themes

Were themes identified in advance or

derived from the data?

Page 3. Four major themes were identified

in advance in correspondence with the

topics of the research questions.

Categories were derived from the data by

axial coding of the second level codes.

27. Software

What software, if applicable, was used

to manage the data?

Page 3. The audio files were transcribed

with F4 software. We used Atlas.Ti for the

coding process and SPSS for the

quantitative data.

28. Participant

checking

Did participants provide feedback on

the findings?

Yes, we organized an invitational

conference to present our results to the

participants of our research project. Some

participants from the interviews had the

opportunity to provide feedback in a group

assignment.

Reporting

29. Quotations

presented

Were participant quotations presented

to illustrate the themes / findings? Was

each quotation identified? e.g.

participant number

Page 5-7. Quotations of participants are

provided for categories with 10 or more

participants. Each quotation is identified by

gender, age and primary cause of visual

impairment, but not by participant number.

30. Data and findings

consistent

Was there consistency between the

data presented and the findings? Yes.

31. Clarity of major

themes

Were major themes clearly presented in

the findings? Page 5-7.

32. Clarity of minor

themes

Is there a description of diverse cases

or discussion of minor themes?

Page 5-7. Minor themes are discussed but

are not provided with a illustrative

quotation of a participant.

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Exploring the patient perspective of fatigue in adults with visual impairment: a qualitative study

Journal: BMJ Open

Manuscript ID bmjopen-2016-015023.R1

Article Type: Research

Date Submitted by the Author: 26-Apr-2017

Complete List of Authors: Schakel, Wouter; VU University Medical Centre, Department of Ophthalmology and Amsterdam Public Health research institute Bode, Christina; University of Twente, Department of Psychology, Health and Technology van der Aa, Hilde; VU University Medical Centre, Department of Ophthalmology and Amsterdam Public Health research institute Hulshof, Carel; Academic Medical Centre, University of Amsterdam, Coronel Institute of Occupational Health

Bosmans, J; VU University Amsterdam, Department of Health Sciences and Amsterdam Public Health research institute, Faculty of Earth and Life Sciences van Rens, Ger; VU University Medical Centre, Department of Ophthalmology and Amsterdam Public Health research institute; Elkerliek Ziekenhuis, Department of Ophthalmology van Nispen, Ruth; VU University Medical Centre, Department of Ophthalmology and Amsterdam Public Health research institute

Primary Subject Heading:

Qualitative research

Secondary Subject Heading: Ophthalmology

Keywords: Low vision, Fatigue, Patient's perspective, QUALITATIVE RESEARCH, Quality of Life


BMJ Open on A

pril 1, 2021 by guest. Protected by copyright.

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0

Exploring the patient perspective of fatigue in adults with visual impairment: a 1

qualitative study 2

3

Wouter Schakel1, Christina Bode

2, Hilde P.A. van der Aa

1, Carel T.J. Hulshof

3, Judith E. Bosmans

4, Gerardus 4

H.M.B. van Rens1,5

, Ruth M.A. van Nispen1 5

6

Author affiliations: 7

1 Department of Ophthalmology, VU University Medical Centre, Amsterdam Public Health research institute, 8

Amsterdam, The Netherlands 9

2 Department of Psychology, Health & Technology, University of Twente, Enschede, The Netherlands 10

3 Coronel Institute of Occupational Health, Academic Medical Center, University of Amsterdam, Amsterdam, The 11

Netherlands 12

4 Department of Health Sciences and Amsterdam Public Health research institute, Faculty of Earth and Life 13

Sciences, VU University Amsterdam, Amsterdam, The Netherlands 14

5 Department of Ophthalmology, Elkerliek Hospital, Helmond, The Netherlands 15

16

Corresponding author: 17

Wouter Schakel, MSc 18

Email: [email protected] 19

VU University Medical Centre PK4X187 20

PO Box 7700 21

1000 SN Amsterdam 22

Tel: +31-20-4444795 23

Fax: +31-20-4444745 24

25

Word count (excluding title page, abstract, references, figures, tables and footnotes): 4339 26

27

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1

ABSTRACT 28

Objectives: Fatigue is an often mentioned symptom by patients with irreversible visual impairment. This study 29

explored the patient perspective of fatigue in visually impaired adults with a focus on symptoms of fatigue, 30

causes, consequences and coping strategies. 31

Setting: Two large Dutch low vision multidisciplinary rehabilitation organizations. 32

Participants: 16 visually impaired adults with severe symptoms of fatigue selected by purposive sampling. 33

Methods: A qualitative study involving semi-structured interviews. A total of four first level codes were top-down 34

predetermined in correspondence with the topics of the research question. Verbatim transcribed interviews were 35

analysed with a combination of a deductive and inductive approach using open- and axial coding. 36

Results: Participants often described the symptoms of fatigue as a mental, daily and physical experience. The 37

most often mentioned causes of fatigue were a high cognitive load, the intensity and amount of activities, the high 38

effort necessary to establish visual perception, difficulty with light intensity and negative cognitions. Fatigue had 39

the greatest impact on the ability to carry out social roles and participation, emotional functioning and cognitive 40

functioning. The most common coping strategies were relaxation, external support, socializing and physical 41

exercise and the acceptance of fatigue. 42

Conclusions: Our results indicate that low vision related fatigue is mainly caused by population specific 43

determinants that seem different from the fatigue experience described in studies with other patient populations. 44

Fatigue may be central to the way patients react, adapt and compensate to the consequences of vision loss. 45

These findings indicate a need for future research aimed at interventions specifically tailored to the unique 46

aspects of fatigue related to vision loss. 47

48

STRENGTHS AND LIMITATIONS OF THIS STUDY 49

� This qualitative study provides an in-depth exploration of the patient perspective of fatigue in visually 50

impaired adults regarding symptoms of fatigue, causes, consequences and coping strategies. 51

� Participants were selected from two Dutch low vision multidisciplinary rehabilitation centres through 52

purposive sampling to reflect a range of demographic characteristics (gender, age and work status) and 53

disease characteristics (ophthalmic diagnosis, visual acuity, visual field and disease duration). 54

� Participant’s symptoms of self-reported fatigue were checked with a well validated instrument to assess 55

fatigue severity. 56

� A random selection of 10% of the citations was matched to the existing coding scheme independently by 57

a second researcher in order to improve reliability of the coding process. 58

� Limitations include the relatively small sample size and the relatively young age and high amount of rare 59

eye conditions in our sample which may limit the transferability of the findings to the total population of 60

visually impaired adults. 61

62

KEYWORDS 63

Low vision · Fatigue · Patient’s perspective · Quality of life · Qualitative research 64

65

INTRODUCTION 66

Fatigue is an often mentioned complaint by patients with irreversible visual impairment. In fact, they have 67

prioritized fatigue in the top 5 of problems with the highest rehabilitation urgency[1]. However, low vision 68

professionals are at a loss how to deal effectively with fatigue because currently no evidence-based treatment 69

options are available for the visually impaired population. Cognitive behavioural therapy has proven to be an 70

effective treatment option for fatigue in patients with cancer[2], chronic fatigue syndrome[3], and Q fever fatigue 71

syndrome[4] but has not been evaluated in patients with visual impairment. To the best of our knowledge, there 72

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seem to be no studies available which address the prevalence or determinants of fatigue in visually impaired 73

persons. Previous research on fatigue in visually impaired patients is often limited to patient populations in which 74

fatigue or feelings of exhaustion is a known symptom[5-7]. In only a few studies, the relation between fatigue and 75

visual impairment has been assessed. Mojon-Azzi et al. (2006) found that a greater impairment of vision was 76

associated with a higher probability of feeling fatigued[8]. Similar results have been reported in The Blue 77

Mountains Eye Study by Chia et al. (2004). In their population-based study, irreversible visual impairment (due to 78

various eye conditions) was associated with increased fatigue when compared to participants without visual 79

impairment and correctable visual impairment[9]. 80

Symptoms of fatigue have been found to have a negative impact on psychological wellbeing, quality of 81

life (QoL), employment and work related activities among patients with chronic disease[10-16]. Similar results 82

have been reported with respect to the consequences of fatigue in patients with vision loss. In the study of 83

Bruijning et al. (2010), consequences of fatigue mentioned by visually impaired patients included difficulty 84

maintaining energy to endure daily activities (e.g. running errands, cooking and work), difficulty concentrating and 85

processing or memorizing information, crossing one’s personal boundaries regarding energy balance and 86

requiring extra effort to perceive and process visual stimuli[17]. 87

Studies have shown that fatigue is related specific to underlying disease mechanisms in different patient 88

populations[13 18 19]. Fatigue in visual impairment might be related to the difficulty of processing visual stimuli 89

which may require more concentration and may result in eye strain. An association between fatigue and sleep 90

related problems has been mentioned in visually impaired patients with some remaining vision[20-22], and in blind 91

patients because of the disturbance in circadian rhythms[23]. The positive effect of physical activity on reduction 92

of fatigue[24] may be difficult to achieve in visually impaired adults because they engage in less physical activity 93

compared to persons without vision loss[25]. Moreover, fatigue can be a symptom of depression[26], a 94

psychological (sub-)clinical disorder which is highly prevalent in persons with visual impairment[27]. Therefore, 95

fatigue may also be related to psychological factors. 96

To our knowledge, coping strategies to deal with fatigue have not yet been studied in visually impaired 97

adults. In rheumatoid arthritis it was shown that patients managed fatigue alone without support from healthcare 98

professionals by pacing and rest, relaxation and accepting fatigue as part of the disease[28]. Rest and sleep were 99

also described to relieve fatigue for patients with ankylosing spondylitis (AS), fibromyalgia (FM), stroke and 100

multiple sclerosis (MS)[29]. In addition, these patients tried to avoid stress and adjusted their activity levels to fit 101

with their reduced capacity[29]. 102

Given the high rehabilitation urgency of fatigue in low vision[1] and the expected increase in the 103

prevalence of people with visual impairment due to an aging society[30], further research is crucial to better 104

understand the etiology of fatigue in this population in order to develop new treatments. In this context, it is 105

important to understand the concept of fatigue as experienced by the patient because of its subjective and 106

multifactorial nature. According to Leventhal’s theory of self-regulation, patients have beliefs and cognitive 107

representations about their illness through illness perceptions[31]. These representations are an important 108

determinant of behavior and can have an impact on the way patients cope with their illness[32]. Understanding 109

these cognitive representations can give insights into the emotional responses to illness which could influence the 110

perceived severity or consequences of fatigue in people with low vision. Qualitative research methods allow an in-111

depth exploration of subjective symptoms such as the experience of fatigue. The aim of this qualitative study is, 112

therefore, to explore the patient perspective of perceived symptoms, causes, consequences and coping strategies 113

to deal with fatigue in a sample of Dutch visually impaired patients (≥ 18 years). 114

115

METHODS 116

117

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Design & participants 118

Patients aged 18 years or older registered at two large Dutch low vision rehabilitation organizations were invited 119

to participate in this study. Patients can be referred to these centres based on criteria described in the Dutch 120

guideline “Vision disorders, rehabilitation and referral”[33] that mainly follow the World Health Organization (WHO) 121

criteria, where low vision is defined as the best corrected visual acuity in the better eye of


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RESULTS 164

165

Sample 166

A total of twenty-one patients were interested to participate in the study of whom 17 participated. Three patients 167

could not be reached after multiple attempts, one person refrained from participation because of personal 168

problems. Data of one participant was excluded from analyses because he was being treated for a psychiatric 169

disorder in the past year, resulting in data of 16 patients. At this point, no further interviews were conducted 170

because of data saturation. The characteristics of the 16 participants are shown in table 1. 171

The majority of participants were male, lived together with a partner and had no comorbidity. The 172

average age of the participants reflected a middle-aged sample, but only a minority was still employed. Vision loss 173

was caused by relatively rare eye diseases, with retinitis pigmentosa as the most frequently reported primary 174

diagnosis. Cataract was present in two participants in addition to their primary cause of visual impairment. The 175

FAS questionnaire showed a fatigue prevalence of 88% (FAS ≥ 22), indicating that the inclusion criterion of self-176

reported fatigue was reflected by the FAS for almost the entire sample. A relatively large proportion of patients 177

(38%) had moderate to (moderately) severe symptoms of depression (PHQ-9 ≥ 10). 178

179

180

Table 1 · Demographic characteristics of the study population (n = 16)

N (%) Observed range

Gender

Female 7 (44)

Male 9 (56)

Age in years [mean ± SDa] 51 ± 13 30-77

Work status

Occupational disability 6 (38)

Voluntary work 5 (31)

Employed 4 (25)

Retired 1 (6)

Marital status, living together 11 (69)

Primary cause of visual impairment

Retinitis pigmentosa 4 (25)

Glaucoma 2 (13)

Ablatio retinae 2 (13)

Neurosarcoidosis 1 (6)

Congenital cataract 1 (6)

Usher syndrome 1 (6)

Ocular albinism 1 (6)

Retinoblastoma 1 (6)

Leber congenital amaurosis 1 (6)

Choroideremia 1 (6)

Diabetic retinopathy 1 (6)

Time since diagnosis in years [mean ± SD] 18 ± 15 1-49

Comorbid diseases 0-4

0 10 (63)

≥ 1 6 (37)

Fatigue severity

FASb [mean ± SD] 29 ± 7 16-46

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Fatigued (FAS ≥ 22) [n (%)] 14 (88)

Vision-related fatigue [mean ± SD] 15 ± 5 9-28

Depressive symptoms

PHQ-9c [mean ± SD] 8 ± 4 3-17

Moderate/severe symptoms (PHQ-9 ≥ 10) [n (%)] 6 (38)

aSD: standard deviation;

bFAS: Fatigue Assessment scale;

cPHQ-9: Patient Health Questionnaire

181

182

Qualitative findings 183

First level codes and common categories of the experience of fatigue related to visual impairment can be found in 184

Table 2. Supporting citations for the larger common categories (n ≥10) are provided in the paragraphs below. 185

186

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Table 2 · Main findings regarding fatigue: common categories

First level code Common categories Na

Experienced symptoms of fatigue Mental 13

Everyday symptom 11

Physical 9

Uncontrollable and unpredictable 6

Need to sleep 5

Perceived causes of fatigue High cognitive load 15

Activities; amount and intensity 13

Effort for visual perception 11

Difficulty with light intensity 10

Negative cognitions 8

Comorbidity 6

Mobility 5

Perceived consequences of fatigue Emotional functioning 15

Social roles and participation 15

Cognitive functioning 14

Daily activities 8

Leisure activities 4

Visual functioning 2

Coping strategies with fatigue Relaxation 13

External support 12

Socializing and physical exercise 11

Acceptance of fatigue 10

Limiting visual perception 7

Balancing activities and relaxation 7

Na: Number of participants to describe each common category 188

189

Experienced symptoms of fatigue 190

The majority of the participants described fatigue as both a ‘mental and physical experience’, with feelings of 191

heaviness, languidness and inertia. 192

“You get a little cranky when you’re tired, a little apathetic and all, but I feel it in my eyes, and yes, 193

sometimes also in my body. It’s just everywhere.” (Female, 41 years, ocular albinism). 194

Only a few participants reported solely ‘physical’ or ‘mental’ elements of fatigue. 195

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“The feeling that you don’t have muscles anymore, that it’s just pudding, just super weak.” (Male, 55 196

years, glaucoma). “Fatigue is an intense feeling with a heavy sensation in my head. As if I’m no longer 197

able to cope with anything.” (Male, 30 years, congenital cataract). 198

Symptoms of fatigue were reported to be ‘present on a daily basis’ by more than half of the participants. Several 199

participants also described fatigue as an ‘uncontrollable and unpredictable’ experience. Almost a third of the 200

participants described their fatigue as ‘a need to sleep’. A great variability existed with regard to fatigue 201

expectations, patterns, frequency and severity. 202

203

Perceived causes of fatigue 204

Almost all participants considered ‘a high cognitive load’ as a result of their visual impairment the cause of their 205

fatigue. A variety of cognitive processes that require more energy or resources due to the loss

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