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Emotional Health & Well-being Matters

A UK wide survey of adults with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis on the impact of their disease on emotional health and well-being

NATIONAL RHEUMATOID ARTHRITIS SOCIETY

ABOUT USThe National Rheumatoid Arthritis Society (NRAS) is the only patient-led charity in the UK focusing specifically on rheumatoid arthritis (RA), and Juvenile Idiopathic Arthritis (JIA), and providing information, support, advocacy and campaigning for people living with RA and JIA, their families, carers and health professionals involved in their treatment and care.

ASK USOur freephone helpline 0800 298 7650 is open from 9.30am to 4.30pm, Monday to Friday. Our trained helpline staff, supported by a team of medical and healthcare professionals, are there to answer your questions on all aspects of living with RA.

If you’d like to talk to someone else with RA, our colleagues can match you with one of our trained telephone support Volunteers, who will then call you back to discuss whatever aspect of living with RA most concerns you. To be put in touch with a Volunteer who has RA, please call the office and they will organise a mutually convenient time for the volunteer to call you.

Our website www.nras.org.uk has a wealth of information about all aspects of living with RA, treatments, the latest research and developments, as well as full details of other useful organisations and charities.

The website also links you to an NRAS online forum, NRAS HealthUnlocked, a safe space where you can get peer support and blog about your experiences.

If you don't have access to the internet or prefer any helpful information sent in the post just call us on 0845 458 3969 or email [email protected].

MEET USLocal NRAS groups meet regularly around the country. To find out if there is a group near you visit www.nras.org.uk/groups, email [email protected] or call 0845 458 3969.

JOIN USTo find out how to support the work of the charity by becoming a NRAS Member, visit www.nras.org.uk. You can make a real difference and help many others living with RA for as little as £20 per year.

CREDITS AND ACKNOWLEDGEMENTSLead Author: Dr Hayley McBain MSc PhD CPsychol

Second Authors: Ailsa Bosworth MBE and Matthew Bezzant LL.B. M.A.

Editors: Ailsa Bosworth MBE and Matthew Bezzant LL.B. M.A.

Designed by: Michael Burbridge Creative

Thanks to contributors: all 1999 people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis who responded to the survey and who took part in the focus group.

REFERENCESFor a full list of all the references (such as to articles in medical journals) used in compiling this booklet, please call NRAS on 01628 823524.

Changing Minds, Changing Services, Changing Lives

2

EMOTIONAL HEALTH AND WELL-BEING MATTERS SURVEY 2018

INTRODUCTION

Ailsa Bosworth MBE, Chief Executive . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

FOREWORD

Dr James Galloway, MBChB MSc CHP PhD FAcadMedEd

Senior Lecturer and Honorary Consultant Rheumatologist, Department for Inflammation Biology, King’s College London . . . . . . . . . . . . . . 5

BACKGROUND AND AIMS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Psychological impact . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Accessing psychological support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Aims. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

METHODS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

RESULTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Sociodemographic profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Age, gender and ethnicity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Living situation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Employment status and qualifications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Disease characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Psychological well-being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11

Psychological support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .16

Negative experiences of psychological support. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .24

Positive experiences of psychological support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26

CONCLUSIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27

RECOMMENDATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .28

REFERENCES. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29

Contents

3


IntroductionAilsa Bosworth MBE Chief Executive

“ Treating emotional and mental health conditions should be regarded as a fundamental part of managing rheumatoid arthritis right from the point of diagnosis.”

A big part of the reason for setting up NRAS in October 2001 was to provide the kind of help and support to people with RA (our JIA children’s service came on stream in later years), which my family and I had been unable to get when I was first diagnosed nearly 40 years ago. A large element of this help and support is about reducing anxiety, normalising the fears, particularly about impact of the disease on the future, and feelings of isolation (even when surrounded by family), and preventing depression. In every major survey we have done in recent years, anxiety and depression have come out as one of the major comorbidities. There has also been a lot more research into anxiety and depression in the last 10 years and we know that many people diagnosed with RA will suffer with these debilitating symptoms, sometimes leading to severe consequences.

When you feel down or worry excessively, these feelings can sometimes be overwhelming and limit your ability to look after yourself and manage your RA and your emotional health. Pain, mental health and disability are strongly linked, so not recognising or treating one can impact the others greatly.

For example, experiencing regular bouts of low mood, anxiety and/or depression may mean you don’t have the will or energy to exercise, which can lead to loss of function. On the other hand, having a lot of pain and inflammation may make it harder to exercise and cause you to be depressed or anxious. Eventually, this vicious cycle harms your sleep, daily activity, ability to work, social interactions, treatment adherence and ability to self-manage. Therefore, treating emotional and

mental health conditions should be regarded as a fundamental part of managing rheumatoid arthritis right from the point of diagnosis.

There is a huge amount of important data in this report, which I hope very much will convince rheumatology teams to sit down and put together a strategy to tackle mental health as well as physical health in routine clinical care. We feel that NRAS has a major role to play in supporting rheumatology teams in this respect. We have services and resources which we know provide the support people need, such as our helpline providing crucial help to people when they need it. Our peer support service exists as a tailored 1:1 telephone service and there is a moderated on-line peer support forum (NRAS/HealthUnlocked) available 24/7. Of course, those with serious mental health issues need the right professional support at the right time, which is not always easily accessible in the NHS, however, for people who are experiencing anxiety, isolation, low mood and non-clinical depression, there are positive things we can do and we’re ready to play our part.

Ailsa Bosworth MBE Chief Executive

4


ForewordDr James Galloway, MBChB MSc CHP PhD FAcadMedEdSenior Lecturer and Honorary Consultant Rheumatologist, Department for Inflammation Biology, King’s College London

“ Health care professionals do not dismiss psychological well-being because of a lack of concern, but rather because of a lack of skill or lack of access to resources.”

The National Rheumatoid Arthritis Society (NRAS) has been driving forward the agenda for research in Rheumatoid Arthritis for many years. A strong patient voice is integral to shaping the way health care is designed and delivered. The latest survey reported here is no exception, tackling a sensitive, stigmatised aspect of rheumatoid arthritis that is all too frequently under-recognised and inadequately treated: the psychological impact of the condition.

Physicians have historically separated the diagnosis and management of psychological health from physical health. We are learning at high cost that this division of care results in suboptimal treatment. By neglecting mental and behavioural health, contemporary medical practice makes it near impossible to succeed in holistic care and improve health outcomes.

This large survey, with nearly 2000 respondents, highlights the dramatic levels of psychological comorbidity that coexist with Rheumatoid Arthritis. A crucial further strength of the work is that Adult Juvenile Idiopathic Arthritis, a condition rarely studied in mainstream research, is also included. The survey goes further than simply describing psychological well-being by providing comprehensive insights into the barriers and facilitators to psychological support.

In 2005 the World Health Organization (WHO) European Ministerial Conference on Mental Health endorsed the statement “No health without mental health”. The WHO highlighted the historical divide between physical and mental health, which is perpetuated by large resource gaps

in healthcare funding. There is a global legacy of neglect and marginalisation of mental health. However, as awareness rises, stigma will fall, and change is possible. Health care professionals do not dismiss psychological well-being because of a lack of concern, but rather because of a lack of skill or lack of access to resources.

If we are to see change, we need the information to justify action. Changing attitudes to psychological comorbidity has relevance across all long-term diseases and will require political commitments to elevate psychological health to the highest tier of the health agenda. National policies need to support the alignment of health care professional training, care pathways and resource allocation with health priorities that truly matter to patients. This survey must be read widely, as it offers the data needed to shape the agenda for change in psychological support for people with Rheumatoid Arthritis and Adult Juvenile Idiopathic Arthritis.

Once again, I would like to convey my gratitude to NRAS and their researchers for this new study.

Dr James Galloway, MBChB MSc CHP PhD FAcadMedEdSenior Lecturer and Honorary Consultant Rheumatologist, Department for Inflammation Biology, King’s College London

5


Background and aimsBackground

Rheumatoid arthritis (RA) is a systemic auto-immune disease that affects over 400,000 people in the UK, which represents at least 1% of the UK adult population. One-third of the 1/10,000 children diagnosed with juvenile idiopathic arthritis (JIA) each year2 will continue to have episodes of active inflammation into adulthood,3-5 referred to in this report as adult juvenile idiopathic arthritis (AJIA).

Psychological impact As with many long-term conditions, living with RA or AJIA requires major psychological adaptation, both at the time of diagnosis and whilst living with the disease. In addition to dealing with the physical effects of the disease, people have to cope with the burden of treatment, taking regular medication, attending hospital outpatient clinics and sometimes facing major surgery. Not only do individuals have to come to terms with symptoms and varying treatments, but they have to adapt to altered life plans, reduced employment prospects and uncertainty about the future course of their disease and its impact on their lives. It is therefore not surprising that RA and AJIA can affect a person’s emotional and psychological well-being.

The degree of psychological need that someone living with a long-term condition, like RA or AJIA, may require can be described across five levels (Figure 1).6 An individual may have needs at more than one level at any one time and may move between the levels at different points in their disease. In order to establish an individual’s level of need, NICE guidelines for the management of RA7 state that mood and quality of life should be systematically assessed within routine clinic time to establish the impact of the disease on a patient’s daily life and to help inform what care and support they receive.

Levels 1 and 2We know that most people with RA and AJIA face some psychological difficulties related to how they cope with the illness and the impact it may have. Research suggests as high as 64% of people with RA will experience some degree of psychological distress, even if these levels do not meet the criteria for a formal diagnosis of a mental health condition.8

Health-related quality of life, which

captures a broader understanding of the impact of a disease on the individual, is also significantly worse in RA than other long-term conditions9 and in AJIA compared to the general population.3;10-15

Level 3A majority of the published research in RA and AJIA has focused on level 3 of the pyramid of psychological need. Looking across all of the published research, it is estimated that up to 66% of people with RA9 and up to 21% of adults with JIA16;17 experience clinical depression, which is a diagnosed mental health condition. The proportion of people experiencing clinical anxiety ranges between 13-70% in RA18-20 and approximates to 32% in AJIA17.

Depression is of particular concern as research suggests that when someone with RA is depressed it increases their risk of death,21 means they are less likely to respond to their treatment and to go into remission22 and are less likely to take their medication.23 Increased anxiety and depression can also inflate disease activity scores irrespective of how much inflammation someone is experiencing, which then impacts on the type of treatment a person receives.22

Levels 4 and 5Little is known about the prevalence of severe and

complex mental health conditions in patients with RA or AJIA - levels 4 and 5 of the pyramid of psychological

need. We do however know that people with conditions such as schizophrenia, schizoaffective

disorder, bipolar disorder, personality disorder and depression with psychosis are likely to die at a

younger age than the general population, mainly as a result of their physical health conditions.

This population are vulnerable and face a number of health inequalities,24;25 like

poorer healthcare, which may explain why those with a severe and complex

mental health condition die younger.26 In arthritis, we do know that people

with psychotic disorders who are over 65 years of age are less likely

to receive NSAIDS and DMARDS, than those without a psychotic

disorder.27

Psychological support

UK guidelines for the management of

RA7;28;29 state that psychological

interventions, such as cognitive

behavioural therapy (CBT),

relaxation therapy,

LEVEL 5Severe and

complex mental illness requiring

specialist mental health interventions

LEVEL 4More severe psychological

problems that are diagnosable and require biological treatments,

medication and specialist psychological interventions

LEVEL 3Psychological problems which are

diagnosable/classificable but can be treated solely through psychological interventions,

e.g. mild and some moderate cases of depression, anxiety states, obsessive/compulsive disorders

LEVEL 2More severe difficulties with coping, causing significant anxiety or

lowered mood, with impaired ability to care for self as a result

LEVEL 1General difficulties coping with illness and the perceived consequences of this for the

person's lifestyle, realtionships etc. Problems at a level common to many or most people receiving the diagnosis.

Figure 1: Adapted from The pyramid of psychological need6

6


stress management and cognitive coping skills, should be offered to people with RA to help them adjust to living with their condition and manage their psychological well-being. There are clear benefits to these types of interventions for people with RA, including improvements in fatigue, pain, coping, anxiety, joint swelling, disability, depression, anxiety and self-confidence.30-33 Little, however, is known about whether they are effective for AJIA.

Accessing psychological supportAlthough rheumatology units in the UK recognise that providing psychological support to people with inflammatory arthritis is part of their role, 3 in 4 rate their overall provision as inadequate. Over two-thirds do not screen patients to identify psychosocial difficulties34 and only 1 in 5 patients with arthritis report being asked about emotional or social issues by a rheumatology professional, even though almost half of the population would like the opportunity.35 This indicates that the care that is currently being delivered within UK rheumatology units does not adhere to UK guidelines. Healthcare professionals report that the reasons they are unable to provide psychological support are a lack of time, a lack of trained clinicians and available training and the costs of delivering this type of service. These issues could be overcome by management and team support for psychological services, the availability of training for clinicians, and integration of psychological support into the usual care people receive.34

A survey of 1210 people with inflammatory arthritis, 522 of whom were NRAS members, found that 46-66% would like access to psychological support, with a preference for face-to-face support from their rheumatology nurse, rheumatologist, GP or family member. The survey however, failed to indicate the specific needs of people with RA or AJIA, or the proportion of people who had actually received psychological support and how this relates to their levels of anxiety or depression. For example, are services being received by those in most need i.e. with the highest levels of anxiety and depression?

Qualitative responses within the survey36 found that the major barriers to receiving psychological support from the patient perspective were poor communication with their healthcare team, which included not feeling heard, insufficient time in consultations, a feeling that healthcare professionals were reluctant to discuss these issues and prioritised physical health, and clinicians lacking the ability to cope with emotional situations. Patients also acknowledged their own reluctance to discuss the negative emotional impact of inflammatory arthritis. Some preferred to manage on their own because they found it difficult to ask for help, but for others finding it difficult to talk was a barrier to receiving the support that they believed could be useful. Again however, these findings were not specific to people with RA or AJIA and the survey did not systematically assess a full range of barriers to requesting and receiving psychological support using established theoretical frameworks, as this survey has done.

AimsThe overall aims of this survey are therefore to:

1. Provide an update assessment of psychological need in adults with RA or AJIA in the UK.

2. Determine the proportion of adults with AJIA or RA in the UK who have requested, been offered and received psychological support and how these relate to levels of psychological well-being.

3. Establish the full range of barriers and facilitators to seeking emotional or psychological support, using an established theoretical framework.

4. Determine the psychological support needs of adults with RA or AJIA in the UK.

5. Understand how rheumatology services, the third sector and government can improve the psychological support needed by people with RA and AJIA.

7


MethodsThe 2018 NRAS ‘Emotional Health and Well-being Matters’ survey was designed together with the School of Health Sciences at City, University of London. This collaboration has brought together expertise in the lived experience of people with RA or AJIA and researchers with expertise in the psychological impact of long-term physical health conditions.

The survey included validated measures of psychological well-being, to allow comparison to previous research in the area, along with questions developed by the team and by a focus group of 10 people with a variety of lived experiences of RA and AJIA, to help understand if and how people have engaged with psychological support services, and the barriers to doing so. The study was approved by City’s School of Health Sciences Research Ethics Committee (ref. Staff/18-19/03) and all participants provided consent.

Participants were recruited by NRAS via their social media platforms (Facebook, Twitter and LinkedIn), membership and non-membership lists through direct mail and in newsletters, the NRAS HealthUnlocked forum, and by healthcare professionals through advertising in rheumatology units. The survey was open for 8 weeks from 15th May 2018. Recruitment was focused on those diagnosed with RA or AJIA, aged 18 years and over and living in the UK.

Analysis of the data was undertaken in IBM SPSS Statistics 24. The data is presented in figures, using either averages, or frequencies and percentages.

ResultsParticipants

A total of 1999 people started the survey, of these 16% did not complete any of the questions, 1% did not have a diagnosis of RA or AJIA and a further 1% were not based in the UK. A final sample of 1650 participants was therefore included in the subsequent analysis. The sample size will however vary throughout this report as some participants terminated the survey before completing all of the questions. Overall, 97% of the sample had self-reported diagnosis of RA and 3% AJIA.

Sociodemographic profile

Geographic profileA majority of participants were from the Southeast of the UK (Figure 1). The number of responses for RA received from Scotland and Wales were approximately proportionate to the population sizes of the UK as a whole, although prevalence of RA and AJIA varies across the country.

Age, gender and ethnicityFor both those with RA and AJIA approximately 88% of the sample were female. Respondents with RA were on average 57 years of age and AJIA 39 years old. Of those providing information on their ethnicity, over 93% of both those with RA and AJIA reported themselves as being White British.

Living situationA majority (72%) of the respondents with RA were married or living with their partner, 22% were living alone and 6% with friends, relatives or in supported accommodation. Of the 55 people with AJIA, two-thirds were married or living with their partner, 15% were living alone and 20% with relatives, friends or in supported accommodation.

One in four of those with RA and AJIA had someone who depended on them for their support and welfare.

Employment status and qualificationsAlmost half of the sample with RA had retired either at normal retirement age or early due to their disease, whereas 1 in 2 participants with AJIA were in paid full or part-time employment. (Figure 2).

One in three participants with RA and 1 in 2 AJIA held a university or further degree (e.g. degree, masters, PhD) (Figure 3).

Disease characteristics

Time since diagnosisApproximately 13% of respondents had early RA (diagnosed within the previous 2 years) and 87% established RA (diagnosed more than 2 years ago). The average disease duration was 12 years for those with RA and 32 years for AJIA.

8


Geographical location of respondents

0 50 100 150 200 250 300 350Other

Northern IrelandNortheast

WalesLondon

Yorkshire and HumbersideEast Midlands

West MidlandsScotland

East AngliaNorthwestSouthwestSoutheast

¡ RA (n=1565) ¡AJIA (N=55)

333

246

181

137

125

124

99

97

92

72

54

23

12

9

2

6

6

7

6

7

4

4

3

0

0

1

Figure 1: Geographical location of respondents, n

Employment status of respondents

0 50 100 150 200 250 300 350 400

Carer

Unemployed

Retired at normal retirement age

Retired early due to RA or JIA

Looking after home and/or family

Unable to work to due to RA or JIA

Paid employment (part time)

Paid employment (full time)

Unpaid or voluntary work (part time)

Unpaid or voluntary work (full time)

Self employed (part time)

Self employed (full time)

Student

¡ RA (n=1565) ¡AJIA (N=55)

20

35

80

2

79

292

278

173

103

368

311

32

31

4

1

2

0

5

14

17

9

4

1

0

1

10

Figure 2: Employment status, n

Highest educational qualification, n

0 100 200 300 400 500 600

Level 4: University or further degree (e.g. degree, masters, PhD)

Level 3: Further Education College (e.g. HND, HNC)

Level 2: Higher Secondary School (e.g. higher grade, AS-Level, A-Level)

Level 1: Lower Secondary School (e.g. Standard grade, O Level, GCSE)

No qualifications

¡ RA (n=1565) ¡AJIA (N=55)

139

3

180

11

373

8

598

29

305

4

Figure 3: Highest educational qualification, n

9


Medications taken When asked which medications they were currently taking for their condition, all AJIA and 99% of respondents with RA were taking at least one medication for their condition. The average number of medications taken by respondents with RA was 4.6 (range 0-11) and 4.3 (range 1-14) for AJIA.

Medications currently taken, nOther

JAK inhibitor

Steroids

Biologics

DMARDS

NSAIDS

Pain medication

Other

JAK inhibitor

Steroids

Biologics

DMARDS

NSAIDS

Pain medication

¡ Pain medication ¡NSAIDS ¡DMARDS ¡ Biologics ¡ Steroids ¡ JAK inhibitor ¡Other

43

28

33

31

21

282

29

1159

733

1258

681

476

105325

AJIA(n=55)

RA(n=1566)

Figure 4: Medications currently taken, n

Self-reported comorbiditiesMany participants had also been diagnosed with other physical health conditions (Figure 5). Respondents with RA were living with, on average, an additional 2 comorbidities. Most commonly osteoarthritis (33%), chronic back pain (31%) and hypertension (26%). Participants with AJIA were living with, on average, an additional 1.6 comorbidities. The most commonly reported were chronic back pain (33%), osteoarthritis (25%) and anaemia (20%).

Figure 5: Diagnosed long-term conditions, n

RA (n=1566) AJIA (n=55)

DiagnosedDiagnosed and treated


Osteoarthritis 524 148 14 4

Chronic back pain 480 177 18 9

Hypertension 409 327 8 7

Osteoporosis 239 140 8 3

Fibromyalgia 234 103 2 2

Anaemia 210 123 11 10

Sjogren’s 197 109 4 2

Lung disease 105 67 2 0

Diabetes 99 64 1 0

Ulcer 78 56 2 1

Heart disease 76 55 0 0

Hypothyroidism 51 40 1 1

Ankylosing spondylitis 44 16 0 0

Psoriatic arthritis 42 31 3 1

Cancer 38 30 0 0

Gout 29 20 1 0

10


RA (n=1566) AJIA (n=55)



Asthma 23 18 2 1

Irritable bowel disease 21 8 1 1

Kidney disease 21 4 1 0

Liver disease 19 5 0 0

SLE (Lupus) 16 7 2 1

Raynaud’s syndrome 15 8 1 0

Skin conditions 12 9 2 2

Scleroderma 11 6 0 0

Hypercholesterolemia 10 7 0 0

Disease activityRespondents were asked how tired they were on the day they completed the survey, from 0 no tiredness to 100 absolutely washed out, no energy at all, as well as how much pain they had in their joints that day, from 0 no pain to 100 pain as bad as it can be. Levels of pain and fatigue were similar for those with RA (fatigue: 59.3; pain: 44.6) and AJIA (fatigue: 60.2; pain: 45.6).

The Health Assessment Questionnaire37 (HAQ) was used to measure levels of disability and takes into account a person’s ability across 8 domains (i) dressing and grooming (ii) rising (iii) eating (iv) walking (v) hygiene (vi) reach (vii) grip and (viii) common daily activities. Scores range from 0 best possible function to 3 worse possible function. Mean scores for respondents with RA were 1.4 and 1.7 for AJIA, which indicates that this sample were more disabled than in other published research in RA38-40 and AJIA3;41.

Only participants with RA were asked to complete the patient-based disease activity score42 (PDAS). The measure allows calculation of disease activity without the need for erythrocyte sedimentation rate (ESR), taking into account early morning stiffness, HAQ functional disability scores, number of swollen joints (out of 28) and perceptions of how active their RA was on the day. Scores can range from 2.7 to 8, with greater scores indicating greater disease activity. The average score for participants with RA was 3.7, which indicates low levels of disease activity.

Psychological well-being

Approximately 1 in 3 respondents with RA had been asked by either their family, friends, partner, rheumatologist and/or rheumatology nurse specialist about how their disease had impacted on their emotional and psychological well-being (Figure 6). For participants with AJIA, peers with AJIA and friends and family were those who asked the most frequently about their emotional and psychological well-being.

UK guidelines for the management of RA7 state that all adult patients should be checked for the development of comorbidities, including depression. This survey indicates that 2 in 5 respondents with RA or AJIA had never been asked by a healthcare professional about their emotional or psychological well-being. In fact, although a majority of respondents had been asked by at least one person, almost 1 in 5 people with RA and 1 in 10 people with AJIA had never been asked by anyone about how their arthritis had impacted on their emotional and psychological well-being. This is particularly worrying given that being asked about levels of psychological distress through routine screening in clinics is an essential first step in identifying patients in need and directing them to appropriate, evidence-based psychological support.

11


Figure 6: Person who asked about their emotional and psychological well-being, n

RA (n=1419) AJIA (n=44)

Rheumatology nurse specialist 528 10

Family 516 16

Friends 489 27

Rheumatologist 466 10

Partner 443 13

GP 365 10

Peer 270 15

NRAS 168 3

Occupational therapist 162 4

Practice nurse 116 2

Physiotherapist 108 4

Counsellor 95 12

Complementary therapist 73 1

Faith-based organisation 40 0

Psychologist 39 5

Pharmacist 35 0

Nutritionist 17 1

Other arthritis charity 16 3

Psychiatrist 15 0

Mental Health Nurse 14 2

Work (e.g. employer, occupational health, colleague) 11 1

Mental health charity 8 1

As part of a self-management programme 4 0

As part of a research study 3 0

Osteopath 2 0

Medical student 2 0

Midwife 1 0

Paramedic 1 0

Level 1 and 2 - personal well-being and quality of lifeRespondents were asked about their personal well-being across three domains (i) life satisfaction, (ii) how worthwhile their life was and (iii) happiness, this enabled us to compare the data to the 2016-17 Personal Well-being Survey43 conducted across the UK. Responses were on a scale of 0-10 with higher scores indicating a more positive outlook.

Personal well-being, mean (SD)

0 1 2 3 4 5 6 7 8

National UK sample Oct 16- Sept 17

AJIA (n=45)

RA (n=1463)

Happiness

Worthwhileness

Life satisfaction

¡ RA (n=1463) ¡AJIA (N=45) ¡National UK sample Oct 16- Sept 17 (na) not available

5.24 (2.54)5.24 (2.44)

7.69 (na)

5.62 (2.72)5.44 (2.53)

7.52 (na)

5.87 (2.71)5.60 (2.96)

5.44 (2.53)

Figure 7: Personal well-being, mean (SD)

12


In comparison to the wider UK population, people with RA and AJIA were less satisfied with their life, believed the things in their life were less worthwhile and were less happy. In fact the proportion of people who scored poorly on life satisfaction and life worth was over 7 times greater in those with RA and AJIA than the national average (Table 8 and Table 9), and almost 4 times greater for happiness (Table 10).

Overall, how satisfied are you with your life nowadays?

0% 10% 20% 30% 40% 50% 60%


AJIA (n=45)

RA (n=1463)

Very good (9-10)

Good (7-8)

Fair (5-6)

Poor (0-4)

¡ RA (n=1463) ¡AJIA (N=45) ¡National UK sample Oct 16- Sept 17

33.36%35.56%

4.46%

8.07%6.67%

30.16%

26.38%31.11%

13.47%

29.18%26.67%

51.92%

Figure 8: Overall, how satisfied are you with your life nowadays?

Overall, to what extent do you feel the things you do in your life are worthwhile?

0% 10% 20% 30% 40% 50%

Very good (9-10)

Good (7-8)

Fair (5-6)

Poor (0-4)

¡ RA (n=1463) ¡AJIA (N=45) ¡National UK sample Oct 16 - Sept 17

30.14%33.33%

3.63%

19.14%20.00%

35.59%

25.36%28.89%

12.18%25.36%

17.78%48.59%

Figure 9: Overall, to what extent do you feel the things you do in your life are worthwhile?

Overall, how happy did you feel yesterday?

0% 10% 20% 30% 40% 50%


AJIA (n=45)

RA (n=1463)

Very good (9-10)

Good (7-8)

Fair (5-6)

Poor (0-4)

¡ RA (n=1463) ¡AJIA (N=45) ¡National UK sample Oct 16 - Sept 17

33.29%31.11%

8.44%

16.47%8.89%

35.92%

25.43%35.56%

16.19%24.81%

24.44%40.45%

Figure 10: Overall, how happy did you feel yesterday?

13


The shortened Arthritis Impact Measurement Scale44 (AIMS2-SF) was used to measure quality of life in this survey. The measure has 5 subscales:

i. physical activity (mobility level, walking and bending, hand and finger function, arm function, self-care and household tasks)

ii. symptoms (arthritis pain)

iii. affect (level of tension, mood)

iv. social interaction (social activities, support from family and friends)

v. role (work)

Scores on each of the subscales can range between 0-10, where 0 represents the best health status and 10 the worst. Data for those with RA can be compared to a previous study,45 but this is the first time this measure has been used in AJIA and hence there is no comparative data.

Respondents to this survey who had RA, had similar levels of arthritis pain, better physical activity and social interactions than the previous study, but poorer levels of tension, mood and work-related quality of life.

Respondents with AJIA had poorer quality of life than respondents with RA both within this survey and previous research, across all 5 domains.

Figure 11: Quality of life scores mean (SD)

Quality of life domain

Comparative data

(n=1109)

RA(n=1465)

AJIA(n=45)

Physical activity 4.56 (1.69) 3.54 (2.04) 3.90 (1.98)

Symptoms 4.95 (2.86) 4.94 (2.88) 5.57 (2.66)

Affect 4.39 (2.16) 4.79 (2.09) 5.20 (1.89)

Social Interaction 5.30 (1.74 4.98 (1.88) 5.50 (1.71)

Role 3.82 (3.16) 3.95 (2.69) 4.02 (2.66)

The Hospital Anxiety and Depression (HAD) Scale46 was used to measure symptoms of anxiety and depression over the previous week. Scores on the two subscales range from 0-21 with higher scores indicating more symptoms.

The survey found that a majority of respondents faced some degree of psychological difficulty, with only between 1.5-6.3% of the sample reporting absolutely no symptoms of anxiety or depression. In fact, 70% of those with RA and AJIA experienced symptoms of depression and just over 54% symptoms of anxiety that would not meet the levels required for a formal diagnosis of a mental health condition (Figure 13). This approximates other research8 and suggests that most people with RA or AJIA will experience some degree of psychological distress, which could be helped by appropriate support.

Level 3 - Depression and anxiety

In both RA and AJIA average scores on the HAD Scale (Table 12) were within the normal range for depression and moderate range for anxiety. Scores were similar between the two diseases.

Experiencing more symptoms of anxiety and depression was not associated with how long someone had been living with RA or AJIA. After controlling for gender and age however, experiencing higher levels of anxiety or depression was linked to greater levels of disability and disease activity in RA. In AJIA, again being more disabled was also associated with experiencing more depressive symptoms.

Figure 12: Average scores for anxiety and depression, mean (SD)

29

Average scores for anxiety and depression, mean (SD)

7.71 (4.20)RA (n=1504)

DEPRESSIONANXIETY

8.89 (4.74)7.04 (4.06)AJIA (n=48) 9.17 (4.37)

Scores on the HAD scale can be categorised into normal, moderate and caseness, which indicates a high likelihood that a person would be diagnosed with clinical anxiety or clinical depression. These high levels of depression were experienced by 1 in 4 people with RA and 1 in 5 AJIA (Figure 13), whilst 1 in 3 were experiencing the highest levels of anxiety (Figure 13). 1 in 6 people with either RA or AJIA were experiencing both the highest levels of anxiety and depression at the same time.

“ Arthritis affects many aspects of my life. Living with constant fatigue and pain make it impossible to live a normal, productive life. This, with depression and the anxiety of what the future holds, and the expectations of those around me to get a job, make me extremely depressed and give me low self-esteem. Many people view arthritis as an old person’s disease and there is a disconnect between their notion of a young person and arthritis. Even health professionals are naive to the extent with which arthritis affects a young person’s life - their prospects for work and family, prognosis, pain, fatigue, mobility, socio-economic position, and societal pressures to achieve and succeed.”

“ I feel I have no value anymore. From a strong independent woman to someone who needs to ask for help I find it soul destroying. I feel guilty all the time and think other people think I am lazy. We were known amongst friends as the party people but now I can’t cope with having friends around anymore and feel I am losing most of them.”

14


Figure 13: Levels of depression and anxiety, nLevels of depression and anxiety, n

NORMAL(0-7)

MODERATE(8-10)

CASENESS(11-21)

¡ RA (n=1504) ¡AJIA (N=48) Depression Anxiety

62.5%

33.3%

48.4%

39.0%

14.6%

29.2%

26.1%

23.3%

22.9%

37.5%

25.5%

37.7%

Survey respondents were also asked to report if they had received a formal diagnosis of depression or anxiety. Twenty-two percent of those with RA reported having a diagnosis of depression (without psychosis) and of these 37% were not receiving treatment (Figure 14). Although a diagnosis of anxiety was less common in RA (15%), 1 in 2 of those with a formal diagnosis were also not receiving treatment. In those with AJIA, almost a third of the sample had been diagnosed with either anxiety or depression (without psychosis) and at least 2 in 5 were not being treated.

Figure 14: Diagnosis and treatment of anxiety and depression, nDiagnosis and treatment of anxiety and depression, n

0%

5%

10%

15%

20%

25%

30%

35%AJIA (n=45)

RA (n=1463)

Diagnosed and treated

Diagnosed and untreated

Diagnosed and treated

Diagnosed and untreated

¡ RA (n=1463) ¡AJIA (N=45) Depression Anxiety

7.9%

14.5% 14.5%

8.0%

10.9%

13.9%

18.2%

7.2%

This survey indicates that 50% of those with clinical anxiety and 69% of people with clinical depression, according to the HAD scale, had not been formally diagnosed with a mental health condition despite meeting the criteria. It is therefore vital that rheumatology services put in place measures to identify individuals who are at risk so that appropriate support can be offered. This could not only improve the mood of people with RA or AJIA, but it also has wider physical and psychological benefits including reducing their risk of death, response to treatment and disease activity.

15


Levels 4 and 5 - Severe and complex mental health conditions

In our sample 2% (n=29) of those with RA and only 1 participant with AJIA reported having a diagnosis of a severe mental illness. After adjusting for age and gender, those with RA and a severe mental illness experienced significantly greater levels of fatigue, pain, functional disability and poorer disease activity than those with RA, but without severe mental illness. There was however, no significant difference in the receipt of DMARDS or NSAIDS between the two groups, as suggested in other research.27

Psychological support

Receipt of psychological support

Forty-four percent of those with RA and 58% of AJIA had received or were currently receiving emotional or psychological support. For 1 in 5 people with RA this was pain management, information and education, relaxation therapy, mindfulness or self-management. 1 in 3 AJIA reported receiving mindfulness, pain management, cognitive behavioural therapy (CBT), counselling and relaxation therapy.

This support was delivered either directly by their healthcare team or via a referral to a specialised NHS service, in a group in their hospital or community, through NRAS’s face-to-face groups, printed and online materials, via another arthritis or mental health charity or in the case of mindfulness and relaxation therapy, via an app.

Despite many people receiving psychological support, 1 in 3 people with RA who had requested or been offered psychological or emotional support had never received it. Figures in AJIA were more positive, with over 90% of those requesting or being offered support receiving it. The sample size for this analysis however, was small (n=12 for requesting and n=21 for being offered).

Half of respondents with RA and 1 in 3 AJIA, who also had either clinical levels or a formal diagnosis of depression or anxiety, had not received or were not receiving emotional or psychological support. Similarly, 1 in 3 respondents with RA and a severe mental illness were not receiving or had never received emotional or psychological support. These findings suggest that even those in most psychological need, who in some cases have a formal diagnosis of a mental health condition, are not receiving the support they need and should be receiving according to UK guidelines.7;28;29;47;48

When a respondent had received or was receiving support they were also asked to rate the extent to which they felt it had helped them manage their well-being on a scale of 1 (not at all) to 6 (a very great extent). In a majority of cases the psychological support received by both those with RA and AJIA was rated as helping them manage their emotional and psychological well-being to at least some extent. With mean scores ranging between 2.29 and 4.10.

“ Counselling through talking therapies has helped me manage my depression relating to my illness and disability.”

“ Following diagnosis I phoned the NRAS helpline and spoke to someone who was very supportive and helped me to process this devastating news. This was then followed up with “peer to peer support”. This telephone conversation with someone my own age with the same condition was again very helpful with helping me come to terms with this illness.”

“ I had a series of 6 sessions of Person Centred Counselling which were paid for by my employer when I was diagnosed with stress and anxiety which stopped me from working. It changed my life and was incredibly helpful in helping me come to terms with my diagnosis and the huge amount of change it had brought about. It helped me to create a plan for the future and look forward for the first time since diagnosis, 3 years earlier.”

Barriers and facilitators to accessing psychological support

Worryingly 1 in 5 people with RA and 1 in 10 with AJIA were unlikely or extremely unlikely to seek psychological or emotional support in the future, even if they felt they needed it.

The ten most frequently reported reasons for this were the same for people with RA and AJIA, with two exceptions:

An overall lack of optimism about the future with RA or AJIA

Not knowing what support was available to them

Finding it difficult to talk about emotions

Feeling their distress was not severe enough to need psychological or emotional support (RA only)

Finding it hard to ask for help with emotions

Finding it difficult to talk about emotions

Preferring to manage emotions themselves

Healthcare professionals not having enough time to help them with their emotions

Believing that the provision of psychological or emotional support or discussing emotions was on not on their healthcare team’s agenda

Healthcare professionals never or rarely ask them about their emotions

Healthcare professionals preferring to focus on their physical rather than psychological or emotional health

Healthcare professionals not knowing how to help them with their psychological or emotional health (AJIA only)

16


Participants with RA were more likely to ask for help if they were younger, felt that they needed help, had asked for support in the past and received it, and believed that health professionals had the time to help them with their emotions. Receiving emotional or psychological support was more likely in people who:

�� Were younger

�� Were experiencing less pain, but greater levels of depression

�� Knew how to access psychological or emotional support

�� Knew how to ask for psychological or emotional support

�� Had a strong intention to seek psychological or emotional support in the future

�� Believed that psychological and emotional support can be effective in helping people manage the emotional consequences of living with RA or AJIA

�� Monitored their own emotional and psychological well-being

It was not possible to conduct the same analysis in the sample with AJIA as the number of respondents was too low.

“ I was referred for CBT in 2006 to help me re-align to having RA instead of just carrying on in a cycle of flare-up and remission like a rollercoaster.” Identifying core beliefs and learning how to recognise negative thought patterns helped me to achieve more balance in my health and I eventually returned to part-time work.”

“ Having RA is unpredictable and causes a great deal of uncertainty and therefore, worry. I am not given any flexibility in my employer’s sickness management policy and thus have the stress of sickness management meetings and the threat of dismissal for a genuine condition. I make a strong contribution to my team, and work 30 hours a week. My performance is not affected unless I am so ill that I have to be off work. This is another stressor for me and people like me who really want to work and not be on benefits.”

“ Because RA is not curable - looking ahead just seems black with no hope of being free from pain and damaged joints.”

“ I find it difficult to talk about emotional and psychological needs with anyone. It’s a difficult thing to bring up in conversation. My husband would probably offer brief support, but would completely forget that support could be long term, not just a ten minute conversation, then get on with housework or carry on as normal.”

“ I have adopted a positive attitude to deal with the ups and downs of living with RA. The medication has put me into remission and I manage my psychological needs myself at the moment.”

“ Consultant Rheumatologist doesn’t give me time of day to discuss with her the pain I get let alone how I’m feeling. I got shooed away and told that it’s my GP that deals with that sort of thing!”

“ Total lack of rheumatology departments, mostly senior medics, inability to even raise this aspect of care.”

“ Consultant isn’t interested in how I feel only in medical results.”

17


Figure 15: Barriers to accessing psychological support, n(%)

Strongly disagree

DisagreeNeither agree nor disagree

Agree Strongly agree

RA AJIA RA AJIA RA AJIA RA AJIA RA AJIA

I know what psychological and emotional support is available to me

271(17.0)

6(10.9)

379(23.8)

17(30.9)

381(23.9

4(7.3)

266(16.7)

12(21.8)

67(4.2)

3(5.5)

I know which healthcare professionals to ask for psychological or emotional support

239(15.0)

4(7.3)

333(20.9)

11(20.0)

286(17.9)

8(14.5)

428(26.8)

17(30.9)

78(4.9)

2(3.6)

I know which family and friends I can ask for psychological or emotional support

115(7.2)

1(1.8)

106(6.6)

4(7.3)

231(14.5)

3(5.5)

655(41.1)

23(41.8)

257(16.1)

11(20.0)

I don’t know how to access psychological or emotional support

209(13.1)

7(12.7)

303(19.0)

13(23.6)

295(18.5)

5(9.1)

374(23.4)

13(23.6)

183(11.5)

4(7.3)

I don’t know how to ask for psychological or emotional support

221 (13.9)

8 (14.5)

301(18.9)

11(20.0)

273(17.1)

5(9.1)

397(24.9)

14(25.5)

172(10.8)

4(7.3)

I prefer to manage my emotions myself

47(2.9)

1(1.8)

130(8.2)

7(12.7)

407(25.5)

5(9.1)

557(34.9)

22(40.0)

223(14.0)

7(12.7)

I don’t feel I need psychological or emotional support

118(7.4)

3(5.5)

352(22.1)

16(29.1)

472(29.6)

15(27.3)

300(18.8)

7(7

(12.7)

122(7.6)

1(1.8)

I am not ready to seek help with my emotions

127(8.0)

6(10.9)

293(18.4)

14(25.5)

467(29.3)

15(27.3)

352(22.1)

7(12.7)

125(7.8)

0(0.00)

If I was to need psychological or emotional support I am able to access the relevant services

181(11.3)

4(7.3)

282(17.7)

12(21.8)

443(27.8)

8(14.5)

359(22.5)

16(29.1)

99(6.2)

2(3.6)

I find it hard to ask for help with my emotions

85(5.3)

2(3.6)

184(11.5)

7(12.7)

308(19.3)

1(1.8)

519(32.5)

20(36.4)

268(16.8)

12(21.8)

I find it difficult to talk about my emotions

101(6.3)

3(5.5)

295(18.5)

8(14.5)

257(16.1)

9(16.4)

487(30.5)

12(21.8)

224(14.0)

10(18.2)

I feel optimistic about my future psychological and emotional health

130(8.2)

7(12.7)

320(20.1)

6(10.9)

515(32.3)

16(29.1)

315(19.7)

10(18.2)

84(5.3)

3(5.5)

I feel optimistic about my future with arthritis

244(15.3)

9(16.4)

468(29.3)

19(34.5)

362(22.7)

5(9.1)

242(15.2)

6(10.9)

48(3.0)

3(5.5)

I would feel like a failure if I asked for psychological or emotional support

243(15.2)

9(16.4)

406(25.5)

16(29.1)

380(23.8)

10(18.2)

257(16.1)

5(9.1)

78(4.9)

2(3.6)

Psychological and emotional support can be effective in helping people manage the emotional consequences of living with RA or JIA

26(1.6)

0(0.00)

23(1.4)

0(0.00)

474(29.7)

10(18.2)

589(36.9)

18(32.7)

252(15.8)

14(25.5)

18


Strongly disagree




I asked for help with my emotions, but never received it

398(25.0)

7(12.7)

481(30.2)

23(41.8)

342(21.4)

7(12.7)

102(6.4)

4(7.3)

41(2.6)

1(1.8)

I think I would be treated differently if people thought I was accessing psychological or emotional support

172(10.8)

3(5.5)

348(21.8)

15(27.3)

469(29.4)

8(14.5)

301(18.9)

16(29.1)

74(4.6)

0(0.00)

My distress is not severe enough to need psychological or emotional support

75(4.7)

3(5.5)

209(13.1)

9(16.4)

459(28.8)

20(36.4)

467(29.3)

10(18.2)

154(9.7)

0(0.00)

I don’t think anything could help me manage my emotions

171(10.7)

8(14.5)

413(25.9)

22(40.0)

560(35.1)

9(16.4)

178(11.2)

3(5.5)

42(2.6)

0(0.00)

I prefer to focus more on my physical than psychological or emotional health

77(4.8)

3(5.5)

290(18.2)

14(25.5)

465(29.2)

12(21.8)

443(27.8)

12(21.8)

89(5.6)

1(1.8)

My emotional and psychological health is as important as my physical health

25(1.6)

0(0.00)

54(3.4)

1(1.8)

347(21.8)

7(12.7)

639(40.1)

21(38.2)

299(18.7)

13(23.6)

I am afraid of what others might think of me if I was to seek help with my emotions

221(13.9)

10(18.2)

435(27.3)

14(25.5)

298(18.7)

3(5.5)

298(18.7)

14(25.5)

71(4.5)

1(1.8)

Healthcare professionals prefer to focus on my physical rather than psychological or emotional health

41(2.6)

0(0.00)

70(4.4)

1(1.8)

281(17.6)

2(3.6)

566(35.5)

18(32.7)

406(25.5)

21(38.2

My healthcare team are not trained in how to deal with my emotional or psychological health

49(3.1)

0(0.00)

149(9.3)

4(7.3)

731(45.8)

17(30.9)

293(18.4)

13(23.6)

142(8.9)

8(14.5)

I don’t think healthcare professionals know how to help me with my psychological or emotional health

56(3.5)

1(1.8)

180(11.3)

8(14.5)

647(40.6)

11(20.0)

329(20.6)

15(27.3)

152(9.5)

7(12.7)

My healthcare team find it difficult to communicate about emotions

58(3.6)

1(1.8)

169(10.6)

7(12.7)

749(47.0)

18(32.7)

278(17.4)

11(20.0)

110(6.9)

5(9.1)

Healthcare professionals never or rarely ask me about my emotions

45(2.8)

0(0.00)

117(7.3)

4(7.3)

201(12.6)

4(7.3)

580(36.4)

11(20.0)

421(26.4)

23(41.8)

I rely on my faith and spirituality to help me manage my emotions

520(32.6)

23(41.8)

244(15.3)

4(7.3)

367(23.0)

12(21.8)

169(10.6)

3(5.5)

64(4.0)

0(0.00)

19


Strongly disagree




I rely on my friends and family to help me manage my emotions

140(8.8)

4(7.3)

219(13.7)

7(12.7)

395(24.8)

7(12.7)

494(31.0)

23(41.8)

116(7.3)

1(1.8)

Providing psychological or emotional support or discussing emotions is not on my healthcare teams agenda

45(2.8)

0(0.00)

131(8.2)

7(12.7)

575(36.1)

13(23.6)

445(27.9)

14(25.5)

169(10.5)

8(14.5)

I am afraid to ask for help with my emotions

164(10.3)

7(12.7)

389(24.4)

14(25.5)

437(27.4)

8(14.5)

292(18.3)

12(21.8

82(5.1)

1(1.8)

I am uncomfortable talking about my emotions

138(8.7)

4(7.3)

345(21.6)

9(16.4)

363(22.8)

11(20.0)

398(25.0)

12(21.8)

120(7.5)

6(10.9)

I am uncomfortable asking for help with my emotions

139(8.7)

3(5.5)

309(19.4)

14(25.5)

366(22.9)

6(10.9)

416(26.1)

15(27.3)

134(8.4)

4(7.3)

I can’t afford to access psychological or emotional support

133(8.3)

3(5.5)

292(18.3)

10(18.2)

509(31.9)

9(16.4)

294(18.4)

13(23.6)

136(8.5)

7(12.7)

I don’t have the time to access psychological or emotional support

151(9.5)

7(12.7)

515(32.3)

17(30.9)

502(31.5)

13(23.6)

160(10.0)

4(7.3)

36(2.3)

1(1.8)

Psychological and emotional support is not freely available where I live

80(5.0)

4(7.3)

152(9.5)

12(21.8)

821(51.5)

13(23.6)

232(14.5)

8(14.5)

79(5.0)

5(9.1)

Healthcare professionals don’t have enough time to help me with my emotions

45(2.8)

0(0.00)

131(8.2)

7(12.7)

575(36.1)

13(23.6)

445(27.9)

14(25.5)

168(10.5)

8(14.5)

I get side tracked and forget to ask for help with my emotions

99(6.2)

3(5.5)

304(19.1)

11(20.0)

577(36.2)

10(18.2)

327(20.5)

17(30.9)

57(3.6)

1(1.8)

Having my emotional and psychological well-being acknowledged by my healthcare team encourages me to tell them how I feel

72(4.5)

2(3.6)

108(6.8)

2(3.6)

702(44.0)

17(30.9)

395(24.8)

15(27.3)

87(5.5)

6(10.9)

I monitor my emotional and psychological well-being

83(5.2)

3(5.5)

249(15.6)

12(21.8)

485(30.4)

9(16.4)

452(28.3)

14(25.5)

95(6.0)

4(7.3)

If needed, how likely are you to seek psychological or emotional support in the future?

75(4.7)

1(1.8)

288(18.1)

5(9.1)

319(20.0)

7(12.7)

531(33.3)

23(41.8)

151(9.5)

6(10.9)

Figure 15 (continued): Barriers to accessing psychological support, n(%)

20


Future psychological support needs

When asked about the type of emotional or psychological support participants would like to receive in the future (Figure 16), people with RA primarily wanted pain management (52%), relaxation therapy (51%), self-management support (39%) and mindfulness (39%). Whilst AJIA wanted pain management (57%), to talk to others with AJIA (57%), relaxation therapy (55%) and mindfulness (50%). Interestingly, 12% of respondents did not want any emotional or psychological support, despite approximately 1 in 5 of these having a formal diagnosis of or experiencing clinical levels of depression or anxiety. This suggests those in most need may be resistant to receiving help, and services should therefore be better able to engage patients and address the misunderstandings they may have about psychological support.

Figure 16: Type of psychological support people would like, n

RA (n=1364) AJIA (n=42)

Pain management 52.0% 57.1%

Talking to other people with RA or JIA 29.9% 57.1%

Relaxation therapy 51.1% 54.8%

Mindfulness techniques 39.1% 50.0%

Self-management support 39.2% 47.6%

Stress management 31.5% 38.1%

Talking therapy, also known as Increasing Access to Psychological Therapies (IAPT)

16.8% 38.1%

Counselling 23.8% 33.3%

CBT 14.0% 28.6%

Psychotherapy or psychoanalysis 10.9% 28.6%

Information or education 24.6% 21.4%

Clinical psychology service 7.3% 21.4%

Complementary therapy 12.6% 16.7%

Couples or family therapy 8.6% 16.7%

The most frequently reported life domains that people would like emotional or psychological support with were finding ways to deal with the fatigue (RA: 67%; AJIA: 79%), pain (58%; AJIA: 62%), low mood (RA: 45%; AJIA: 55%) and anxiety (RA: 36%; AJIA: 62%) they were experiencing (Figure 17). Other prevalent areas included finding ways to exercise (35%) and cope with or achieve better sleep (35%) for people with RA and anger (62%) and self-confidence (48%) in AJIA.

Figure 17: Life domain targeting psychological support

RA (n=1364) AJIA (n=42)

Fatigue 66.9% 78.6%

Pain 57.6% 61.9%

Anxiety 36.4% 61.9%

Anger and frustration 27.9% 57.1%

Low mood 44.9% 54.8%

Self-confidence 28.8% 47.6%

Body image 23.9% 42.9%

Exercising 35.5% 40.5%

Planning for the future 27.9% 40.5%

Mobility 27.3% 35.7%

Uncertainty 25.4% 35.7%

Depression 28.7% 33.3%

Fear 17.0% 31.0%

Sleep 34.6% 28.6%

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RA (n=1364) AJIA (n=42)

Isolation and loneliness 24.5% 28.6%

My role and identity 19.4% 28.6%

Eating a healthy diet 23.3% 26.2%

Work 13.3% 26.2%

Sexual difficulties 12.2% 26.2%

Morning stiffness 30.3% 23.8%

Guilt 14.9% 23.8%

Relationship difficulties 11.3% 21.4%

Social life 14.2% 19.0%

Taking my medication 8.8% 19.0%

Family planning 1.9% 16.7%

Friendships 8.2% 14.3%

Stopping smoking 2.3% 2.4%

Survey respondents stated that they would like this support to come from a range of sources, including the rheumatology nurse specialist, rheumatologist, trained counsellors or psychotherapists, family members, GP and NRAS (Figure 18). In a majority of cases, respondents did however want this support to be individually delivered by a professional (Figure 19), when it was needed (Figure 20).

Figure 18: From whom would you like psychological support?, n

RA (n=1364) AJIA (n=42)

Rheumatology Nurse Specialist 45.6% 31.0%

Rheumatologist 35.9% 19.0%

Counsellor or Psychotherapist 31.2% 54.8%

Family 30.1% 38.1%

GP 28.1% 23.8%

NRAS 27.1% 28.6%

Friends 26.5% 45.2%

Partner 26.0% 38.1%

Another person with RA or AJIA 20.6% 50.0%

Practice Nurse 16.2% 4.8%

Occupational Therapist 15.4% 11.9%

Complementary Therapist 15.2% 21.4%

Psychologist 14.0% 47.6%

Physiotherapist 13.1% 11.9%

Mental Health Nurse 10.2% 21.4%

Nutritionist or Dietician 9.8% 11.9%

Other arthritis charity 7.0% 21.4%

Psychiatrist 6.2% 16.7%

Faith-based organisation 3.9% 0.0%

Mental health charity 3.7% 14.3%

Pharmacist 2.6% 2.4%

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Figure 19: Mode of delivery, nMode of delivery, n

� RA (n=1364) � AJIA (N=42)

Face-to-face, individuallywith a professional

Face-to-face, individually withanother person with RA or JIA

Email

Telephone / Helpline Online, via a forum Online, via Skype or similar technology

App

Online, via a structured website

Within regular consultations with

my healthcare team

Face to face in a groupwith other people who

have RA or JIA

Written materials

78.6%62.2%

26.2%22.2%

14.2% 9.5% 12.2% 11.9% 12.1%

26.2%19.4% 23.8%19.0%

38.1%33.1% 45.2% 28.6%27.6% 24.9%

14.3% 10.3% 11.9%

Figure 20: Timing of psychological support, nMedications currently taken, n

Not at all

Within 12-18months of diagnosis


Within 6 months of diagnosis

At diagnosis

During a flare

Continuously (i.e. embedded into regular care)

When it is needed

Not at all



Within 6 months of diagnosis

At diagnosis

During a flare

Continuously (i.e. embedded into regular care)

When it is needed

¡When it is needed ¡Continuously (i.e. embedded into regular care) ¡During a flare

¡At diagnosis ¡Within 6 months of diagnosis ¡Within 6-12 months of diagnosis

¡Within 12-18 months of diagnosis ¡Not at all

76.19%

19.52%

64.29%28.57%

21.43%

19.05%

23.81%

0%

61.44%

50.73%33.14%

26.25%

17.08%

9.46%5.13%

0.59%

AJIA(n=42)

RA(n=1364)

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Negative experiences of psychological support

When asked to share an example of unhelpful psychological support participants described the lack of empathy and compassion that was displayed by some healthcare professionals, this included rheumatologists, rheumatology nurse specialists, GPs and physiotherapists. Even when patients were clearly distressed within their consultations, this was often not acknowledged or addressed, with healthcare professional preferring to focus on the physical aspects of their RA rather than the impact it was having on their emotional well-being:

“ I cried at an RA appointment with a specialist nurse and she did not ask me why or what was causing me to feel this way. It felt like my emotional well-being was brushed aside to deal with RA treating medications and physical help.”

“ I once shared with my rheumatologist that although my RA was getting under control it felt like a dark shadow that could engulf me at any time and that made me very anxious. This was just dismissed and I was told to be pleased my drugs were working.”

“ An element of empathy from consultants, GPs and other healthcare professionals about the massive impact this condition has on people’s lives. It is devastating and turns your life upside down. Over the last 5 years I’ve had little or no emotional support and it’s really now taking its toll on my well-being.”

Survey respondents found that being told to “pull yourself together”, “man up” or “get used to it” without the offer of any support was extremely unhelpful and demoralising and even when patients asked for help some described being completely dismissed which left people feeling more distressed and despondent.

“ Asked my GP for help with depression and said I was scared of being seen as weak and not being able to cope with everything, he shouted at me and said I shouldn’t be so insulting to his patients with real problems.”

“ I have repeatedly asked for help with the pain without achieving any relief. I broke down in tears at my first consultation with the RA consultant, she just wrote to my GP to say that I was distressed. No action was taken.”

Perhaps reflecting healthcare professional’s preference for focusing on physical rather than mental health, patients also found themselves prescribed drugs rather than being offered psychological support:

“ Being offered anti-depressants rather than a listening ear when I was tearful.”

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“ I was offered anti-depressants by a GP when I burst into tears during a brief visit for another matter. I declined as I felt it wasn’t further medication I needed, but support. I therefore consulted another GP who referred me to Time to Talk”

“ I mentioned I was low to my rheumatology team, they knew I was on antidepressants. But they didn’t offer me any support”

Not having your emotional well-being acknowledged and not receiving help in times of need discouraged patients from asking for help in the future.

“ [I] approached my GP for help as the stress of divorce / single parenthood whilst coping with RA was getting to me. He smiled, shrugged and did not offer anything to help, no time off, no medication, no therapies. In the intervening years I have struggled on alone as I don’t see the point in asking for help via that route as I didn’t get help when I desperately needed it.”

This was particularly prominent on diagnosis when many people were told to “accept it and carry on”. Participants reported feeling particularly vulnerable at this time; fear, loneliness and uncertainty for the future were some of the issues raised, but were not acknowledged by healthcare professionals. Other respondents described a total absence of support, either because they had never been asked about their emotional well-being or because such services were not available in their local area. There were however cases when psychological support was received either through their workplace, NHS or privately, but the type of support offered didn’t fit with the patients’ needs or ended abruptly before they had the opportunity to fully explore their issues and resolve them.

“ …I was assigned some counselling after attending employee healthcare through work. The sessions were 20 minutes long and she spent most of this time re-arranging the furniture so I had somewhere comfortable to sit (I think this should have been done prior to my session rather than in it). She was an ex- nurse and was only interested in talking about the medical side of things and painted me a very dark picture of my future - not something I wanted to hear when the reason why I’d been referred is because I had been identified as being high risk of suicide from the employee healthcare doctor. At the end of my second session, she said that she thought I was ok and she didn’t need to see me again! I had yet to reveal anything about myself (by my own admission, I bottle things up and need to build a relationship before I divulge things). I left feeling even more desolate than before…. I also tried to access help via my GP. I was told there was a 3-6 month wait and was given a telephone number for IAPT. At that point in time, I wasn’t in a place for conversing over the phone. Still waiting to hear about counselling on the NHS, which isn’t good. People who need it, aren’t usually ones to push and feeling ignored and unworthy, only exacerbates these feelings.”

“ At my GP surgery l was offered counselling. I took up the offer only to find out it was only for 6 sessions. Then it was stopped. This l found to be ridiculous & so although l attended the 6 sessions l came out worse than when l started as they had opened a can of worms & then left me high & dry with no support to address the issues that had been raised.”

Respondents felt that psychological support from someone without an understanding of RA was particularly unhelpful.

“ Not exactly unhelpful, but Counsellors have never taken RA seriously….I really don’t think they have any idea how RA changes your life.”

“ Also [the counsellor] did not seem to understand nature of RA, which didn’t inspire confidence.”

“ Psychologist not understanding the condition and how everyday can be different for me. Not understanding that some days you have fatigue and not acknowledging the fact that you may not want to see friends as a result of the fatigue and telling you to go out more is not always helpful.”

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Positive experiences of psychological support

There were also examples of helpful psychological support from a range of sources including family, friends, their faith and healthcare professionals.

“ Most of my support comes from close friends when needed. My Rheumatologist and GP are excellent and I could talk to them...”

“ My husband is a huge support. He gives me help with the practical aspects of living with RA and also with the emotional. He is empathetic and always listens when I express how I’m feeling physically or emotionally. As my RA has progressed and I am no longer able to dance, play golf or walk any distance, he has done everything in his power to support me in taking up other interests. My husband encourages me to keep working part-time as long as I feel able. He also encourages me to be socially active. He has taken over many of the household tasks, but doesn’t treat me like an invalid. In most circumstances, he encourages me to do what I feel able to do, but he’s mindful of my need to pace myself. Moreover, my husband hasn’t allowed my disease to impact on any aspect of our relationship; we’ve been married for almost 43 years. I believe that his support is the reason that I haven’t yet felt the need to seek professional emotional or psychological help.”

This came in the form of a hug in times of need, having space to verbalise their thoughts and feelings and have them acknowledged, providing practical support and understanding the unpredictable nature of the condition and the limitations this led to. This support was hugely important and as described by one participant in some cases lifesaving;

“ At first I was in so much pain I wanted to end my life but with help from husband, family and medical personnel and medication it all helped me realise my life was important and how much I would be missed if not around”

For further information and research into the role of the family for people with rheumatoid arthritis, see ‘Family Matters’, an NRAS survey of almost 400 people from 2012.

Support from other people with RA or JIA was thought to be particularly important as it allowed people to share experiences, receive understanding and empathy, and discuss solutions to the problems they were experiencing. This was often through structured self-management programmes, online and via NRAS’s helpline and peer to peer support.

“ I attended a group, [a] 6 week session at my hospital about managing around the home, I found this beneficial as I could chat with other people with RA.”

“ Counsellor played a huge part in helping me to accept my RA....its effect on my mobility...its limitations...seeing myself as disabled.”

“ Being part of an online community with others who share the same struggles has been invaluable! Peer-based support seems to be the best at actually understanding and sympathizing. There are also many who have more experience who can offer solutions or different perspectives than those I had considered before. And sometime a virtual hug and an “I understand” is all that I need to bolster myself up and keep going.”

Others felt fortunate to have been able to access professional psychological support from counsellors, alternative therapists, CBT therapists and psychotherapists, who enabled them to come to terms with their diagnosis, feel empowered and equip them with the resources and skills they needed to manage the consequences of living with their condition.

“ Following diagnosis I phoned the NRAS helpline and spoke to someone who was very supportive and helped me to process this devastating news. This was then followed up with “peer to peer support”. This telephone conversation with someone my own age with the same condition was again very helpful with helping me come to terms with this illness.”

“ I was very fortunate to have received excellent emotional support from GPs at the point at which I could no longer cope with my RA and manage work. I had felt completely unable to cope physically because of my RA and hence had reached a point where I just could not go on. I had a number of extended appointments and was then encouraged to self refer for IAPT/counselling/CBT which is the procedure followed in my area. By making this self-referral I felt empowered as it gave me a sense of control and offered me choices. I received 10 one-one sessions which helped me explore my physical difficulties and pain and the fears I had given I was unable to continue working. The emotional support enabled me to cope with this transition and explore how I could rebuild my life”

“ My counsellor has given me some good analogies to help change my mind set from putting myself last, to looking after myself first (put your own oxygen mask on first - referring to instructions given when on board a flight) etc. He’s also helped take away some of the guilt/ anger I’ve been feeling by making me look at the advice I would give to someone else in my shoes and making me take that advice by setting me goals and chatting about them in my following session. He’s also explained the importance of avoiding stress and showing me examples of when stress and my flare ups have correlated. He’s also recommended some good books to help me at home with regard to ACT- Acceptance and Commitment therapy, as I’ve struggled to come to terms with my diagnosis and pushed myself to continue working etc., even though it was having detrimental effects to my health”

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Conclusions In the field of rheumatology, it is well accepted that inflammatory arthritis is associated with poorer psychosocial well-being, as demonstrated in this survey. People therefore need psychological support in addition to the clinical, medical treatment they receive. This support is not widely available through secondary care rheumatology teams and access through primary care can take time, which might be problematic if someone’s need is urgent. The data in this survey provides new and up to date insights into the reality and size of the problem, which we hope will be helpful to health professionals working in the field. This data also provides additional research opportunities.

The survey found that 2 in 5 respondents had never been asked by a health professional about their emotional or psychological well-being, despite being less satisfied with their life and less happy than the UK average. This is a concerning statistic given current recommendations and clearly suggests that there is unmet need in people with RA and AJIA who are experiencing psychological and emotional distress. We already know from research that people who are suffering from anxiety and depression are less able to manage their condition themselves, which can lead to poorer clinical and psychological outcomes. If their emotional well-being is therefore not being discussed, measured or treated, this can have devastating consequences and their clinical medical treatment is likely to be less effective, reducing the odds of reaching remission.

Three in 4 health professionals recognise that providing psychological support to people with inflammatory arthritis is part of their role, but themselves rate their overall provision as inadequate, which may explain why healthcare professionals are not asking about mental health. Raising awareness of these findings with healthcare professionals will lead to discussion and measurement of anxiety and depression on diagnosis and beyond. Interestingly and worthy of further research, as the total number of adults with JIA was relatively low in this survey, was the fact that people with AJIA had poorer quality of life than those with RA.

Our report also shows that 50% of people with clinical anxiety and 69% of people with clinical depression, according to the HAD scale, have not been formally diagnosed with a mental health condition, despite meeting the criteria. This means that significant numbers of people who are in most need are missing out on treatment that may help their mental health and in turn their overall physical health. It is therefore an imperative for rheumatology services to start routinely measuring anxiety and depression in order to intervene before the individual is in crisis. Acting early, before crisis occurs, has the potential to improve a person’s ability to self-manage, their physical and psychological outcomes and prevent greater loss of work days.

Although only a small number of people reported having a diagnosis of severe mental illness, those with RA and a severe mental illness experienced significantly greater levels of fatigue, pain, functional disability and poorer disease activity. As the sample numbers were low, further research is needed to explore why these health inequalities exist and how best to support people with severe mental illness and inflammatory arthritis.

Worryingly this survey found that 1 in 3 people with RA who had requested or been offered psychological or emotional support had never received it. Most concerning however, was that half of respondents with RA and 1 in 3 with AJIA who had either clinical levels or a formal diagnosis of anxiety or depression had not received any emotional support. Our hope therefore, is that health professionals working in rheumatology start routinely opening the door to supportive discussions and relevant sign-posting and referral where this is not already being done. Whilst it is clear that there are significant issues accessing professional support by rheumatology teams, often, just being able to talk about the problem, without there necessarily being an instant solution, can be really helpful. This report has shown that the majority of people receiving support found it helpful in managing their emotional health and well-being. Therefore, tackling the issues around access is vitally important if people with RA and AJIA are to be able to manage their well-being better.

Exploring the potential barriers to asking for and receiving emotional support has given us unique insight into the complexity of what people think about their emotional state, emotional support and their perception about what is or is not available. This survey suggests that people with RA and AJIA experience a number of barriers to asking for and receiving psychological support. Around 40% of both people with RA and AJIA did not know how to ask for or access support, and over a third in both cases were uncomfortable asking for help with their emotions and 44% (RA) and nearly 40% (AJIA) find it difficult to talk about their emotions. Again approximately 40% in both RA and AJIA believe that health professionals don’t have enough time to help them with their emotions. Yet about 30% (RA) and nearly 40% (AJIA) say that having their emotional and psychological well-being acknowledged by their healthcare team encourages them to tell their team how they feel.

To overcome the most influential barriers, steps need to be taken to address some of the beliefs that people with inflammatory arthritis hold about psychological support. This includes health professionals taking action to explain how effective psychological and emotional support can be and actively measuring emotional well-being and communicating the results to their patients. This will result in patients understanding that their team has a duty and the time to help support them, and that it’s OK to ask for support when needed.The results suggest that targeting older people and those experiencing high levels of pain may be most beneficial.

The survey also indicates what areas of their life people with RA and AJIA would like support with and how. Whilst services should always be tailored to the needs of the individual, and different types of helpful support were identified, it is important to understand that most people wanted face-to-face support, with a professional when they felt it was needed.

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RecommendationsGiven the wealth of data generated from this survey, the recommendations from this report are aimed at a number of different bodies, including NRAS, and aim to be concise and achievable. NRAS will be working to promote these recommendations with the aim of improving access and awareness of psychological and emotional support for people with RA and AJIA, to ultimately improve people’s emotional well-being, although there may not be a quick solution to the challenges involved in achieving these aims given the issues healthcare professionals face when trying to access help for their patients. NRAS welcomes the support of all stakeholders in the rheumatology community who would like to work with the charity to help achieve these aims. NRAS is also in a position to help those people with RA/AJIA with their emotional well-being who fall into Levels 1 and 2 (and some in Level 3) (Figure 1, page 6).

Monitoring mental health�� The first step to monitoring mental health in people diagnosed with RA and those who take JIA into adulthood is measuring it. We therefore recommend that a suitable instrument to measure anxiety and depression is used at the point of diagnosis and then periodically, for example in people’s annual reviews. These results and the signs of anxiety and depression then need to be discussed with patients.

�� In addition to periodic monitoring using standardised questionnaires, every contact with a member of the rheumatology team should include a discussion about the person’s emotional well-being. This ensures that patients are aware that this aspect of their lives is as important as their physical health, validates what they are feeling and creates an open dialogue about these issues.

Access to support�� To overcome some of the barriers that people with inflammatory arthritis experience when asking for psychological support, steps need to be taken to ensure that patients know how to access and ask for support and know how effective psychological and emotional support can be.

�� In order to ensure earlier intervention to improve emotional health and well-being for those who have an identified need at diagnosis and indeed at any point in their pathway, Trusts, Foundation Trusts, Health Boards and NHS services need to work with rheumatology teams to understand the findings of this report and establish what their own services already offer or do not offer. This will enable them to determine a plan as to how the whole team can support the mental health of their patients with RA and AJIA, as well as their physical well-being.

�� In line with NICE guidelines for RA and depression in adults with a chronic physical health problem this plan should include how services can either integrate psychological interventions into their current practice, for example up-skilling Specialist Nurses and other allied health professionals to provide 1:1 or group-based psychological interventions (such as CBT) or refer patients to appropriate psychological interventions, depending on their level of need.

�� Rheumatology teams should also sign-post their patients, both newly diagnosed and established patients, to third sector organisations, such as NRAS, who can provide crucial emotional and self-management support through their helpline, peer support (telephone and online) and tailored packages of information. Early support can reduce anxiety, feelings of isolation, confusion about treatment, support in advocating adherence to medication and more. At the time of writing, NRAS is working with hospitals across England to provide evidence of the value of sign-posting to the charity’s services.

�� Ultimately, the governments in the United Kingdom and providers of NHS services must ensure that adequate funding is available in order for rheumatology departments to be able to implement the above recommendations. A potential increase in short-term spending now could ensure greater savings in the long-term, as people may be better able to manage their mental health and consequently, their physical well-being.

Further Research�� Further research is needed into why people with severe mental illness and inflammatory arthritis experience increased pain, fatigue, functional disability and disease activity and how we might address these health inequalities

�� Further research is needed in order to understand why adults with JIA have poorer quality of life in comparison to people with RA.

�� There is already established research into the benefits of psychological interventions for people with RA. However, little is known about the impact of such interventions for adults with JIA. It is important, therefore, to undertake further research in this area to understand if people with AJIA experience similar benefits.

�� As a result of the findings in this survey, it is important that supporting patients to feel comfortable asking for emotional support during routine clinical appointments becomes a much greater priority for multi-disciplinary teams.

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Lead Author: Dr Hayley McBain MSc PhD CPsychol

Second Authors: Ailsa Bosworth MBE and Matthew Bezzant LL.B. M.A.

Editors: Ailsa Bosworth MBE and Matthew Bezzant LL.B. M.A.

Emotional Health & Well-being MattersA UK wide survey of adults with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis on the impact of their disease on emotional health and well-being

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