Manuscriptcommissie Prof. dr. J. Dekker Prof. dr. A.W.M. Evers Prof. dr

Manuscriptcommissie

Prof. dr. J. Dekker

Prof. dr. A.W.M. Evers

Prof. dr. G. Sinnema

Prof. dr. M.J. Sorbi

Dr. T.P.M. Vliet Vlieland

Cover design and layout by: In Zicht Grafisch Ontwerp, Arnhem Printed by: Ridderprint, Ridderkerk

ISBN 978-90-5335-464-3

© J.E. Vriezekolk 2011 All rights reserved. No part of this thesis my be reproduced or transmitted, in any form or by any means, e lectronic or mechanical, including photocopy, recording, or any information system or retrieval system, without permission in writing from the author.

Targeting distress in rheumatic diseases Emotionele lijdensdruk bij reumatische aandoeningen (met een samenvatting in het Nederlands)

Proefschrift

ter verkrijging van de graad van doctor aan de Universiteit Utrecht op gezag van de rector magnificus, prof. dr. G.J. van der Zwaan, ingevolge het besluit van het college voor promoties in het openbaar te verdedigen op vrijdag 18 november 2011 des ochtends te 10.30 uur

door

Johanna Everdina Vriezekolk geboren op 21 augustus 1969 te Apeldoorn

Promotor

Prof. dr. R. Geenen

Copromotoren

Dr. C.H.M. van den Ende

Dr. A.M.M. Eijsbouts

Dit proefschrift werd (mede) mogelijk gemaakt met financiële steun van de Sint Maartenskliniek en het Reumafonds.

Voor mijn ouders

Contents Chapter 1 General introduction Part I

9

Psychological adjustment in rheumatic diseases 25

Chapter 2 Longitudinal association between coping and psychological distress in rheumatoid arthritis: a systematic review

27

Chapter 3 The coping flexibility questionnaire: development and initial validation in patients with chronic rheumatic diseases

81

Part II

Multidisciplinary rehabilitation

103

Chapter 4 Poor psychological health status among patients with 105 inflammatory rheumatic diseases and osteoarthritis in multidisciplinary rehabilitation: need for a routine psychological assessment Chapter 5 Behavioural change, acceptance, and coping flexibility in highly distressed patients with rheumatic diseases: feasibility of a cognitivebehavioural therapy in multimodal rehabilitation

125

Chapter 6 An acceptance-oriented cognitive-behavioural therapy embedded in multimodal rehabilitation for highly distressed patients with rheumatic diseases: a proof-of-concept study

145

Chapter 7 General discussion

159

Chapter 8 Dutch summary (Nederlandse samenvatting)

173

Acknowledgement (Dankwoord)

185

Curriculum Vitae

193

Publications 195

1

chapter

General introduction

general introduction

Introduction Psychological distress is prevalent among patients with rheumatic diseases such as rheumatoid arthritis (RA) and osteoarthritis (OA). Conservative estimates for prevalence of depression in these groups range from 13% to 20%1-3 and for anxiety disorders from 9% to 13%.4, 5 Psychological distress has been consistently associated with a variety of negative outcomes, including increased symptom burden,6 poor adherence to treatment regimens,7 increased health care utilisation8 and medical costs.9 Identifying and treating psychological distress is an important facet of care of patients with rheumatic diseases,10 but distress is not always adequately recognised during medical visits.11 Therefore, routine screening of psychological distress in clinical practice is warranted.

Non-pharmacological treatment approaches including multidisciplinary rehabilitation

programmes are frequently recommended as an adjunct to medical treatment in order to deal with the consequences of RA and OA.12-14 Current multidisciplinary rehabilitation programmes primarily focus on preserving and improving patient’s quality of life by improving physical functioning and activities of daily living and work.15 A targeted treatment of psychological distress is, however, not common practice in rehabilitation. Treatment of psychological distress might improve the outcomes of the rehabilitation programme and lead to better daily functioning and well-being, and reduced health care utilisation.

Cognitive-behavioural therapies (CBT) in rheumatic diseases have often been

shown to be effective in reducing psychological distress and improving physical and psychological functioning.16, 17 One possible way to improve treatment efficacy is to incorporate a cognitive-behavioural therapy in multidisciplinary rehabilitation for a selected group of rheumatic patients with high levels of psychological distress. New approaches in the treatment of chronic pain suggest that an acceptance-oriented approach of illness might be of additional value over and above traditional approaches such as those focused on stimulating active problem focused coping18 with favourable outcomes on physical and psychological well-being and reduced health care use.19-21 Although studies in chronic pain suggest the potential usefulness of including accep tance-oriented principles in CBT, no studies have been conducted to evaluate the effect of acceptance-oriented CBT embedded in multidisciplinary rehabilitation in a selected target population of highly distressed patients with rheumatic diseases referred to rehabilitation.

This thesis is divided into two main parts. The first part examines the psychological

factors associated with psychological adjustment to rheumatic diseases. The second part evaluates the development and the effects of multidisciplinary rehabilitation on

11

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chapter 1

physical and psychological outcomes in rheumatic diseases. This general introduction describes the major themes, aims, and outline of the thesis.

Rheumatic diseases Rheumatic diseases comprise more than 100 different disorders with a wide variety of clinical presentations.22 RA and OA are the most common rheumatic disorders with greater preponderance in women than men. In North American and European countries estimated population-based prevalence rates of inflammatory rheumatic diseases including RA, psoriatic arthritis, and ankylosing spondylitis vary from 0.1% to 1.1%,23, 24 and prevalence rates for symptomatic OA range from 2.1% to 16.7% depending on the joint(s) involved (e.g., knee, hip, and hand) and sharply increase with age.25-27 RA is a chronic inflammatory auto-immune disease affecting the joints, particularly the shoulders, wrists, fingers, and knees leading to pain, swelling, stiffness and, in the longer term, to joint damage and bone destruction.23 OA is a degenerative disease characterised by damage to the articular cartilage, bone deformations, and variable degrees of mild joint inflammation, leading to use-related joint pain, swelling, stiffness, restricted range of motion of the involved joint, and cracking of the joints on movement. OA is most common in the hands, knees, hips, and spine. Although a single joint could be involved, generally several joints are affected.28 Both disorders are chronic, disabling, and progressive. The precise causes of both RA and OA are still unknown, but consensus states both diseases as multifactorial disorders resulting from the interaction of genetic and environmental factors.

The impact of rheumatic diseases The impact of rheumatic diseases on patient’s physical and psychosocial well-being is substantial. Pain is the most frequently reported symptom in RA and OA.29 In addition to pain, patients with RA and OA may experience fatigue and stiffness. A rheumatic disease can lead to impaired functioning and participation in daily life and to losses of valued activities across multiple life domains (e.g., household, work, social relationships, and leisure)30, 31 which in turn may lead to poor psychological well-being.3, 32, 33 Also the activity of pro-inflammatory cytokines may threat psychological well-being.34

Cross-sectional research indicates a bidirectional relationship of psychological

distress with pain, fatigue, and disability. Psychological distress is associated with increased symptom burden,35 and higher levels of pain, fatigue, and disability are considered predictors of psychological distress.36,

37

Conversely, depression is

concurrently and longitudinally associated with increased pain among patients with early inflammatory arthritis38. In prospective research, anxiety predicts an increase of pain in patients with recent onset RA.39 In addition, demographic variables including

12


younger age,40 female sex,41 not married,42 and a low educational level43 are associated with depression.

Psychological distress may also impede treatment effectiveness. Patients with

depression are less compliant to treatment regimens and fewer patients show positive effects of drug treatment.44, 45 Health care utilisation8, 46, 47 and medical costs9, 47 are increased among patients with rheumatic diseases suffering from high levels of psychological distress. The cause of psychological distress in rheumatic diseases is a complex interplay between clinical, demographic, and psychological factors.36 Patients suffering from high levels of distress are at risk for poor health outcomes and reduced treatment effectiveness.

Psychological adjustment to rheumatic diseases The impact of the rheumatic disease greatly varies between patients. This heterogeneity can be partly explained by factors including illness cognitions, coping behaviours, and social support.48 Lazarus & Folkman’s stress-coping model has been extensively used to understand the psychological adjustment to rheumatic diseases. Coping is defined as “constantly changing conscious cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person”.49 Several coping dimensions have been distinguished including problem and emotion focused coping, active and passive coping, and engagement and disengagement coping. The coping dimensions have been categorised using hierarchical taxonomies of coping.50, 51 Coping, the thoughts and behaviours that people use to manage situations that are appraised as stressful, is one of the most studied constructs in the adjustment to a chronic illness.

Social support and perceptions of mastery (e.g., self-efficacy, internal locus of

control), active or problem focused coping (e.g., problem solving, planning, information seeking) and emotion regulation strategies (e.g., emotion expression) are positively, although not consistently, associated with better physical and psychological well-being.34, 51-55 Loss of control (e.g., helplessness) and passive, emotion focused coping (e.g., catastrophising, denial, resting, wishful thinking) are generally negatively associated with patient’s physical and psychological well-being.56-59

The findings that cognitive, behavioural, and social factors influence patient’s

psychological distress, has led to the utilisation of psychological interventions (e.g., cognitive-behavioural therapy) aimed at changing maladaptive cognitive and behavioural coping patterns in patients with chronic pain including rheumatic diseases.

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chapter 1

Psychological interventions in rheumatic diseases Psycho-educational intervention is an umbrella term encompassing both traditional educational or teaching activities and psychological interventions.60 Many psychoeducational interventions combine an educational intervention and psychological intervention (e.g., cognitive-behavioural therapy), sometimes supplemented by spousal support. One common intervention in this area is self-management that usually combines the presentation of disease-related information with assistance in learning of and adapting new activities and skills. Another common intervention is cognitive- behavioural therapy that generally combines education (e.g., about the interrelationship of the emotional, cognitive, physical and behavioural components of pain) with learning new competencies such as relaxation, distraction and imagery techniques, goal-setting, cognitive restructuring for controlling or managing disease-related stressors (e.g., pain, distress), and transferring these new skills to everyday life.

The efficacy of cognitive-behavioural interventions in rheumatic diseases is

hampered by the large diversity of cognitive-behavioural interventions in terms of contents (e.g., education, problem solving, stress management, relaxation, pain coping, biofeedback, assertiveness and communication skills training), methods (e.g., group, individual sessions, brochures, homework assignments) and formats (e.g., number and length of sessions, embedded in multimodal pain management programmes or single treatment modality). Meta-analyses of randomised controlled trials in RA and OA demonstrated that these heterogeneous cognitive-behavioural interventions have been effective in reducing pain, disability, and psychological distress over and above standard medical care. The effect sizes of this complementary therapy were on average small (table 1).16, 17, 61, 62 Two recent meta-analyses found that cognitive-behavioural therapy is moderately effective in treating depressive symptoms and depression in people with a somatic disease (effect sizes between 0.42 – 0.49).63, 64 The magnitude of the effect size, however, was dependent on the severity of depressive symptoms at the time of inclusion,63 suggesting that selected patients with high levels of psychological distress may benefit the most from cognitive-behavioural therapy. Customising interventions to specific patient characteristics (e.g., disease duration, levels of distress, cognitive-behavioural coping pattern) has been suggested as a way to optimise treatment effectiveness,65 but studies examining the effectiveness of such tailored treatments are sparse. Few studies across various chronic pain disorders have shown that treatment targeting specific patient subgroups yielded promising outcomes.66-68 Offering selected patients with high levels of distress a cognitive-behavioural therapy as part of multidisciplinary rehabilitation has not been evaluated yet.

14


Table 1 E ffect sizes (ES) with confidence interval (CI) from meta-analyses of cognitivebehavioural interventions in (randomised) controlled clinical trials in RA and OA. Author

Psychological distress ES (CI)

Sample

ES (CI)

Physical disability ES (CI)

Astin

0.22 (0.07,0.37)

0.27 (0.12,0.42)

0.15 (0.01,0.31)

RA

Dixon17

0.18 (0.09,0.26)

0.15 (0.06,0.24)

Anxiety: 0.28 (0.11,0.46)

RA & OA

16

Pain

Depression: 0.21 (0.05,0.36) Mullen61

0.20 (0.08,0.33)

0.09 (-0.03,0.21)

0.27 (0.15,0.42)

RA & OA

Riemsma62

0.09 (0.02,0.19), ns.

0.21 (0.11,0.32)

0.14 (0.04,0.25)

RA

Therapeutic targets in cognitive-behavioural therapy Cognitive-behavioural therapy is generally aimed at changing maladaptive cognitive and behavioural coping patterns. New theories and findings in chronic pain suggest that an acceptance-oriented approach of illness might be of additional value over and above traditional coping approaches such as stimulating active problem focused coping.18 Preliminary evidence indicates that low levels of illness acceptance predict increases of depression and anxiety.69, 70 Acceptance-oriented interventions have been shown promising in patients with chronic pain with favourable outcomes on physical and psychological well-being and reduced health care use,19-21 but as yet no studies evaluated the effect of such acceptance-oriented intervention in highly distressed patients with rheumatic diseases.

The disease course of patients with rheumatic diseases is often unpredictable.

Ideally, patients deploy a variety of coping strategies in the context of changing disease activity, symptoms, and activity limitations. Inevitable consequences of the disease may be better accepted, whereas changeable consequences could be better dealt with. Some authors have suggested that not the use of a specific coping strategy but rather the flexibility of coping protects against disability and distress.48,

71

Coping

flexibility refers to the ability to modify coping responses according to situational demands. It has been shown to be positively related to psychological well-being72-74 and to attenuate the negative impact of pain and disability on depression.75

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chapter 1

Overall, acceptance and coping flexibility seem viable therapeutic targets in

cognitive-behavioural therapy for patients with rheumatic diseases and high levels of distress. The development and evaluation of acceptance and coping flexibility as therapeutic mechanisms of change is a novel approach in the treatment of highly distressed patients with rheumatic diseases.

Multidisciplinary rehabilitation Since there is no definite cure for rheumatic diseases, treatment approaches are aimed at reducing inflammation, preventing or controlling joint damage, relieving symptoms, and maintaining or improving functional ability and health-related quality of life. In the past decades novel disease-modifying anti-rheumatic drugs and biologicals (e.g., TNF alpha inhibitors) and improved surgical treatments for patients with (inflammatory) rheumatic diseases have been introduced. For many patients these treatment approaches resulted in reduced disease activity and improvement of clinical outcomes. However, these regimens have not for all patients led to improvements in patient- reported outcomes including pain, functional ability, and global perceived health status.76-79 Therefore, non-pharmacological treatment approaches are frequently recommended in addition to drug treatment in order to deal with the consequences of the disease.12-14

Patients with a high physical and psychological burden are often referred to multi-

disciplinary rehabilitation in specialised rheumatology settings. Hallmark features of team-based care is the patient-centred approach, in which every aspect of patient’s health status is systematically evaluated and the treatment goals and plans for interventions are jointly set, evaluated, and attuned.80 The International Classification of Functioning, Disability and Health (ICF) framework is hereby increasingly applied as a clinical tool in problem analysis and treatment planning.81, 82

Multidisciplinary rehabilitation programmes encompass a wide range of interventions

from physical exercises, joint protection and energy conservation strategies, advice on orthoses and assistive devices, to patient education and self-management interventions. Rehabilitative goals may be focused on reducing activity limitations and participation restrictions across multiple life domains (e.g., household, work, leisure, social relations). Generally small beneficial effects of multidisciplinary rehabilitation programmes on functional ability and work status have been demonstrated.83-87

Patient’s suffering from the burden of a rheumatic disease is a significant clinical

problem that should be considered in treatment planning when patients are referred to rehabilitation. Systematically targeting patient’s psychological distress is, however, not a common rehabilitative goal in multidisciplinary rehabilitation. Moreover, to our

16


knowledge, no specialised rheumatology clinic has integrated a cognitive-behavioural therapy within a multidisciplinary rehabilitation programme for selected patients with inflammatory rheumatic diseases and OA with high levels of distress. We developed an acceptance-oriented cognitive-behavioural therapy aimed at reducing psychological distress and stimulating behavioural change for selected patients with high levels of psychological distress referred to multidisciplinary rehabilitation. The cognitive- behavioural therapy was embedded in a multimodal rehabilitation programme and designed to target acceptance and coping flexibility. The development and proof-ofconcept evaluation of the effectiveness of this programme is described in this thesis.

Aim and outline of thesis The twofold aim of this thesis is (1) to examine the role of coping in the adjustment to rheumatic diseases and to develop a new instrument to assess coping flexibility (chapter 2 and 3), and (2) to evaluate the effectiveness of multimodal rehabilitation for selected patients with rheumatic diseases and high levels of psychological distress (chapter 4, 5, and 6).

In chapter 2, the longitudinal association between coping strategies and the course

of psychological distress in RA is reviewed. Coping strategies are categorised using a hierarchical taxonomy of coping. The methodological quality of the included studies is assessed and a best-evidence synthesis determines the level of evidence for coping as prognostic factors for depression, anxiety, and general distress.

In chapter 3, a report on the development and the validity of a self-report measure

to assess coping flexibility is given. To examine the initial validity of the coping flexibility questionnaire (COFLEX), hypothesised correlations with psychological and physical adjustment outcomes, pain, and coping strategies are examined.

Chapter 4 is a prospective observational study to examine the psychological health

status of patients with inflammatory rheumatic diseases (i.e., RA, psoriatic arthritis, and ankylosing spondylitis) and generalised OA referred to multidisciplinary rehabilitation and evaluates the pre-to-post treatment changes in psychological well-being, illness cognitions, and coping.

In chapter 5, the development and feasibility of the integration of an acceptance-

oriented cognitive-behavioural therapy within a multimodal rehabilitation programme for highly distressed patients with rheumatic diseases is described.

Chapter 6 reports on a proof-of-concept study that was conducted to evaluate the

potential effectiveness of this rehabilitation programme on psychological distress. The role of acceptance and coping flexibility as therapeutic mechanisms of change in psychological distress is also explored.

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chapter 1

In chapter 7, the main findings and study limitations are reviewed and clinical

implications and future directions for research are discussed.

18

Chapter 8 is a Dutch summary of the thesis.


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48. Gatchel RJ, Peng YB, Peters ML, Fuchs PN, Turk DC. The biopsychosocial approach to chronic pain: scientific advances and future directions. Psychol Bull 2007;133:581-624. 49. Folkman S, Moskowitz JT. Coping: pitfalls and promise. Annu Rev Psychol 2004;55:745-774. 50. Connor-Smith JK, Flachsbart C. Relations between personality and coping: a meta-analysis. J Pers Soc Psychol 2007;93:1080-1107. 51. Skinner EA, Edge K, Altman J, Sherwood H. Searching for the structure of coping: a review and critique of category systems for classifying ways of coping. Psychol Bull 2003;129:216-269. 52. Keefe FJ, Rumble ME, Scipio CD, Giordano LA, Perri LM. Psychological aspects of persistent pain: current state of the science. J Pain 2004;5:195-211. 53. Penninx BW, van Tilburg T, Deeg DJ, Kriegsman DM, Boeke AJ, van Eijk JT. Direct and buffer effects of social support and personal coping resources in individuals with arthritis. Soc Sci Med 1997;44:393-402. 54. Ramjeet J, Smith J, Adams M. The relationship between coping and psychological and physical adjustment in rheumatoid arthritis: a literature review. J Clin Nursing 2008;17:418-428. 55. Zautra AJ, Manne S. Coping with rheumatoid arthritis: a review of a decade of research. Ann Behav Med 1992;14:31-39. 56. Covic T, Adamson B, Hough M. The impact of passive coping on rheumatoid arthritis pain. Rheumatology (Oxford) 2000;39:1027-1030. 57. Edwards RR, Bingham CO, III, Bathon J, Haythornthwaite JA. Catastrophizing and pain in arthritis, fibromyalgia, and other rheumatic diseases. Arthritis Rheum 2006;55:325-332. 58. Evers AW, Kraaimaat FW, Geenen R, Jacobs JW, Bijlsma JW. Pain coping and social support as predictors of long-term functional disability and pain in early rheumatoid arthritis. Behav Res Ther 2003;41:12951310. 59. Van Lankveld W, Naring G, van’t Pad Bosch P, van de Putte L. The negative effect of decreasing the level of activity in coping with pain in rheumatoid arthritis: an increase in psychological distress and disease impact. J Behav Med 2000;23:377-391. 60. Hawley DJ. Psycho-educational interventions in the treatment of arthritis. Baillieres Clin Rheumatol 1995;9:803-823. 61. Mullen PD, Laville EA, Biddle AK, Lorig K. Efficacy of psychoeducational interventions on pain, depression, and disability in people with arthritis: a meta-analysis. J Rheumatol Suppl 1987;14 Suppl 15:33-39. 62. Riemsma RP, Taal E, Kirwan JR, Rasker JJ. Systematic review of rheumatoid arthritis patient education. Arthritis Rheum 2004;51:1045-1059. 63. Beltman MW, Voshaar RC, Speckens AE. Cognitive-behavioural therapy for depression in people with a somatic disease: meta-analysis of randomised controlled trials. Br J Psychiatry 2010;197:11-19. 64. Van Straten A, Geraedts A, Verdonck-de Leeuw I, Andersson G, Cuijpers P. Psychological treatment of depressive symptoms in patients with medical disorders: a meta-analysis. J Psychosom Res 2010;69:23-32. 65. Turk DC. The potential of treatment matching for subgroups of patients with chronic pain: lumping versus splitting. Clin J Pain 2005;21:44-55. 66. Evers AW, Kraaimaat FW, van Riel PL, de Jong AJ. Tailored cognitive-behavioral therapy in early rheumatoid arthritis for patients at risk: a randomized controlled trial. Pain 2002;100:141-153. 67. Sharpe L, Allard S, Sensky T. Five-year followup of a cognitive-behavioral intervention for patients with recently-diagnosed rheumatoid arthritis: effects on health care utilization. Arthritis Rheum 2008;59:311316. 68. Van Koulil S, van Lankveld W, Kraaimaat FW et al. Tailored cognitive-behavioral therapy and exercise training for high-risk fibromyalgia patients. Arthritis Care Res (Hoboken ) 2010;62:1377-1385. 69. Barlow JH, Cullen LA, Rowe IF. Comparison of knowledge and psychological well-being between patients with a short disease duration (< or = 1 year) and patients with more established rheumatoid arthritis (> or = 10 years duration). Patient Educ Couns 1999;38:195-203. 70. McCracken LM, Eccleston C. A prospective study of acceptance of pain and patient functioning with chronic pain. Pain 2005;118:164-169. 71. Zeidner M, Saklofske D. Adaptive and maladaptive coping. In: Zeidner M, Endler NS, eds. Handbook of coping: theory, research, applications. New York: John Wiley & Sons. 1996;505-531.

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72. Blalock SJ, DeVellis BM, Holt K, Hahn PM. Coping with rheumatoid arthritis: is one problem the same as another? Health Educ Q 1993;20:119-132. 73. Fresco DM, Williams NL, Nugent NR. Flexibility and negative affect: examining the associations of explanatory flexibility and coping flexibility to each other and to depression and anxiety. Cognit Ther Res 2006;30:201-210. 74. Lester N, Smart L, Baum A. Measuring coping flexiblity. Psychology and Health 1994;9:409-424. 75. Schmitz U, Saile H, Nilges P. Coping with chronic pain: flexible goal adjustment as an interactive buffer against pain-related distress. Pain 1996;67:41-51. 76. Pincus T, Sokka T, Kautiainen H. Patients seen for standard rheumatoid arthritis care have significantly better articular, radiographic, laboratory, and functional status in 2000 than in 1985. Arthritis Rheum 2005;52:1009-1019. 77. Uhlig T, Heiberg T, Mowinckel P, Kvien TK. Rheumatoid arthritis is milder in the new millennium: health status in patients with rheumatoid arthritis 1994-2004. Ann Rheum Dis 2008;67:1710-1715. 78. Welsing PM, Fransen J, van Riel PL. Is the disease course of rheumatoid arthritis becoming milder? Time trends since 1985 in an inception cohort of early rheumatoid arthritis. Arthritis Rheum 2005;52:2616-2624. 79. Ziegler S, Huscher D, Karberg K, Krause A, Wassenberg S, Zink A. Trends in treatment and outcomes of rheumatoid arthritis in Germany 1997-2007: results from the National Database of the German Collaborative Arthritis Centres. Ann Rheum Dis 2010;69:1803-1808. 80. Vliet Vlieland TP, Li LC, MacKay C, Badley EM. Does everybody need a team? J Rheumatol 2006;33:18971899. 81. Cerniauskaite M, Quintas R, Boldt C et al. Systematic literature review on ICF from 2001 to 2009: its use, implementation and operationalisation. Disabil Rehabil 2011;33:281-309. 82. Peterson DB. International Classification of Functioning, Disability and Health: an introduction for rehabilitation psychologists. Rehabil Psychol 2005;50:105-112. 83. Ahlmen M, Sullivan M, Bjelle A. Team versus non-team outpatient care in rheumatoid arthritis. A comprehensive outcome evaluation including an overall health measure. Arthritis Rheum 1988;31:471-479. 84. Badamgarav E, Croft JD, Jr., Hohlbauch A et al. Effects of disease management programs on functional status of patients with rheumatoid arthritis. Arthritis Rheum 2003;49:377-387. 85. Hagel S, Lindqvist E, Bremander A, Petersson IF. Team-based rehabilitation improves long-term aerobic capacity and health-related quality of life in patients with chronic inflammatory arthritis. Disabil Rehabil 2010;32:1686-1696. 86. Tijhuis GJ, Zwinderman AH, Hazes JM, van den Hout WB, Breedveld FC, Vliet Vlieland TP. A randomized comparison of care provided by a clinical nurse specialist, an inpatient team, and a day patient team in rheumatoid arthritis. Arthritis Rheum 2002;47:525-531. 87. Vliet Vlieland TP, Hazes JM. Efficacy of multidisciplinary team care programs in rheumatoid arthritis. Semin Arthritis Rheum 1997;27:110-122.

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Psychological adjustment in rheumatic diseases

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2

Longitudinal association between coping and psychological distress in rheumatoid arthritis: a systematic review Vriezekolk JE, van Lankveld WGJM, Geenen R, van den Ende CHM. Ann Rheum Dis 2011;70:1243-50

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Abstract Objective To examine the longitudinal association between coping and psychological distress in rheumatoid arthritis. Methods Bibliographic databases up to July 2010 were searched for longitudinal studies with a follow-up of ≥ 6 months. Two reviewers assessed the methodological quality of the included studies. Study characteristics, coping strategies, and coping-psychological distress associations were extracted. Coping strategies were categorised using a hierarchical taxonomy. A best-evidence synthesis determined the level of evidence for a prognostic association of coping with depression, anxiety, and general distress. Results From an initial set of 2605 potentially relevant studies, 19 studies (14 cohorts) met the predefined selection criteria. Ten studies were of ‘high quality’ (≥ 12 of 18 quality criteria). Unadjusted bivariate correlations showed that baseline approach-oriented coping was negatively correlated (r between 0.007-0.46, p values < 0.05) and baseline avoidantoriented coping was positively correlated (r between 0.29-0.64, p values < 0.05) with psychological distress at follow-up. Adjusted for baseline psychological distress, limited evidence was found that avoidant-oriented coping was longitudinally associated with an increase in psychological distress. Specifically, the categories helplessness, avoidance, and wishful thinking were prognostically associated with increased general psychological distress. Approach-oriented coping was not associated with subsequent psychological distress. Conclusion The prognostic value of coping strategies for later psychological distress in rheumatoid arthritis is weak. Limited evidence suggests that avoidant-oriented coping is associated with increased subsequent psychological distress. No evidence was found that approach-oriented coping protects against an increase of psychological distress.

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longitudinal association between coping and distress in ra

Introduction The prevalence of psychological distress (depressive or anxiety symptoms) is higher in persons with rheumatoid arthritis (RA) than in the general population with conservative estimates varying between 13% and 20%.1, independent of disease duration,

3, 4

2

Psychological distress is virtually

but it is concurrently associated with increased

levels of pain and disability,5-7 decreased response to anti-TNF therapy,8 non-adherence to treatment regimens,9 and increased health care use.10 This suggests that psychological distress may negatively affect an individual’s health status and treatment effectiveness.

The stress-coping model has been extensively used to understand the psychological

adjustment to RA. Coping refers to the thoughts and behaviours that people use to manage situations that are appraised as stressful.11 Several coping dimensions have been distinguished (e.g., problem vs emotion focused, active vs passive, and engagement vs disengagement) and categorised using a hierarchical taxonomy of coping.12 To enhance physical and psychological functioning, cognitive-behavioural interventions generally modify dysfunctional thoughts and pain-related behaviours. These interventions and self-management interventions have demonstrated small positive–albeit short-term–effects for pain, disability, and psychological distress.13, 14 The longitudinal association between coping and a subsequent change of psychological distress in interventions or in real life, however, have only been scarcely investigated. A thorough examination of the prognostic value of coping strategies modifiable through psychological interventions will give insight into the possible effective components of psychological interventions and may facilitate the construction of psychological interventions to improve long-term psychological and physical outcomes.

An indication of a potential impact of coping on psychological distress is stronger

in longitudinal than cross-sectional studies, although a longitudinal design cannot definitely confirm or refute causality. So far, the evidence for the prognostic association of coping strategies with future psychological distress has scarcely been systematically reviewed and summarised. Previous reviews15-18 were narrative reports and findings were drawn from both cross-sectional and longitudinal studies irrespective of the methodological quality of those studies. We set out to systematically review longitudinal cohort studies of modifiable coping strategies and psychological distress. Our aim was to examine which coping strategies are prospectively associated with psychological distress in RA.

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Methods Search strategy and inclusion procedure Six bibliographic databases (PubMed, EMBASE, CINAHL, Scopus, PsycINFO, and Web of Science) were searched for longitudinal studies that examined modifiable coping strategies and psychological distress in RA. Search terms comprised key words involving study design, study population, outcome measures, and coping variables (see supplementary table S1). Studies up to July 2010 were included. The search strategy was limited to adults (≥18 yrs), studies published in English, German, French or Dutch, and peer reviewed articles. Included articles were hand searched for additional relevant studies. Initially, title and abstract of the identified references were independently screened for eligibility by three reviewers (JV, WvL, and CvdE). Full text articles of all potential relevant studies were obtained and assessed for inclusion by two reviewers independently (JV and WvL). Cases of disagreement were resolved through discussion. When consensus was not achieved, a third reviewer (CvdE) made the final decision.

Selection criteria A study was eligible when: (1) the design was a prospective cohort study, (2) the study population either exclusively comprised patients with RA or included an identifiable and separately analysed subgroup of patients with RA, (3) the follow-up period was at least 6 months excluding studies with short-term follow-up period (≤ 3 months)19, (4) psychological distress was assessed at baseline and follow-up, (5) coping variables were assessed at baseline. Intervention studies were excluded from this review.

Methodological quality assessment Two reviewers (JV and WvL) independently assessed the methodological quality of the studies according to a standardised set of criteria 20 that were used in previous reviews in musculoskeletal disorders21-24. The criteria list consisted of 18 items covering study population, response rate, follow-up, treatment, outcome, prognostic factors, and data presentation, and was pilot tested in three studies not included in the review (see supplementary table S2). The criteria were scored as positive (‘+’), negative (‘-’) or unclear (‘?’). For each study a total quality score was computed by counting all positively rated items. A priori, a study with a score ≥ 12 (2/3 of the attainable 18) was arbitrarily considered of ‘high’ quality. Cases of disagreement were resolved through discussion. When consensus was not achieved, a third reviewer (CvdE) made the final decision.

30


Because one study included in this review was from one of the reviewers involved in the quality assessment, a third reviewer (CvdE) scored this particular study. The interobserver agreement of quality assessment was derived by the kappa statistic.

Taxonomy of coping strategies The coping strategies extracted from the studies were categorised into a hierarchical model of coping.12 Each coping strategy was coded at three levels of detail (figure 1): (a) top level: Engagement coping versus disengagement coping, (b) mid-level: primary control engagement, secondary control engagement, negative emotion-focused coping, mixed emotion-focused coping, and narrow disengagement, and (c) low-level: specific family of coping strategies identified as core categories of coping in a previous study.25 At the top level, engagement coping comprises approach-oriented cognitive, behavioural, or emotional responses directed towards the stressor, whereas disengagement coping comprises cognitive, behavioural, or emotional responses oriented away from the stressor (see supplementary table S3).

The coding of coping strategies was based on description of the scales provided in

the article and, when possible, on review of items comprising each scale. Because several studies presented results only for broad coping scales, it was not possible to code all findings at each level of detail. Some scales, such as adaptive and avoidant coping from the COPE 26 and passive coping from the Utrecht Coping List 27, reflect a combination of several coping strategies and could be coded only at the top level. One reviewer (JV) coded all coping strategies and consensus about allocation of these coping strategies was reached through discussion with two reviewers (WvL and RG).

Data extraction A standardised form was used to fill out data regarding study population, inclusion and exclusion criteria, follow-up period, outcome and its measures, prognostic variables and its measures, and bivariate correlations and multivariate associations adjusted for baseline levels of psychological distress. To avoid redundancy, only the first follow-up measurements in studies with repeated follow-up measurements were analysed. Findings were differentiated with regard to three affective domain outcomes: depression, anxiety, and general distress. 28 When generic (e.g., 36-item Short Form (SF-36) measure of mental health) and specific (e.g., Arthritis Impact Measurement Scale 2 – Affect, that is specific for rheumatic diseases) measures of psychological distress were provided, the disease-specific measures were extracted and used for analysis.

The results of the association between coping strategies and psychological distress

were summarised and synthesised at the mid-level of the coping taxonomy (figure 1).

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Figure 1 H ierarchical model of coping, adapted from Connor-Smith and Flachsbart.12

Engagement coping

Primary control engagement coping Problem solving

Instrumental support

Positive emotion regulation

Secondary control engagement coping Distraction Cognitive restructuring

Negative emotion focused coping

Mixed emotion focused coping

Disengagement coping

Narrow disengagement coping

Avoidance

Helplessness

Wishful thinking

Note. Only low-level coping categories (e.g., problem solving, helplessness, etc.) found in this review are depicted.

32


Within some studies conflicting findings of the association between psychological distress and various low-level coping strategies belonging to a similar mid-level coping category were reported. If the clear majority of findings(≥ 75%) from the associations between various low-level coping strategies and psychological distress within a study was consistent, the study result was reported in concordance with these findings and scored as positive, negative or no (i.e., null-findings or non-significant association between mid-level coping and psychological distress). If evidence of the various low-order coping strategies were conflicting within a study, it was scored as mixed.

One reviewer (JV) extracted the data and one reviewer (CvdE) checked an

unselected subsample (n=3) for accuracy of the data extraction.

Statistical analyses Bivariate associations between baseline coping and psychological distress at follow-up were examined. Significance was set at p value < 0.05. The heterogeneity of included studies, outcome measures, coping strategies, and statistics precluded meta-analysis. A best-evidence synthesis was conducted to examine the evidence for a longitudinal association between mid-level coping and change in depression, anxiety, and general distress. Change of psychological distress was defined as baseline adjusted (residual) change, that is, the distress score at follow-up adjusted for the distress score at baseline.

We defined four levels of evidence as used in previous prospective cohort reviews:21, 29

(1) strong evidence, consistent findings (≥ 75% of the studies report consistent findings) in at least two high-quality studies, (2) moderate evidence, consistent findings in one high-quality study and at least two low-quality studies, (3) limited evidence, findings in one high-quality study or consistent findings in at least two low-quality studies, and (4) conflicting evidence, inconsistent findings irrespective of study quality (i.e., < 75% of the studies report consistent findings). To determine the level of evidence, findings in low-quality studies were only used when less than two high-quality studies were available. Post hoc sensitivity analyses examined the robustness of the best-evidence synthesis.

Results Search strategy and inclusion From 2605 non-duplicate references, 18 studies met our selection criteria (figure 2).30-47 An additional hand search yielded another two studies.48, 49 Of the two duplicate studies, 32, 48

only the most recent publication was analysed.32 If studies of the same cohort

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reported on different coping strategies,32, 34, 36, 40, 41, 43, 49 or presented results after different follow-up periods,30, 31 each separate study was included. In total, 19 studies comprised of 14 cohorts were included in this review.30-47, 49

Characteristics of included studies Table 1 displays the characteristics of the included studies. In most studies patients were recruited from hospitals or rheumatology practices. Studies varied with respect to sample size (n=45 to n=1024), attrition rates (0% to 36.6%), follow-up period (6 months to 5 years), and outcome measures (eight studies depression only, four studies both depression and anxiety, and seven studies general distress. Two studies investigated only women34, 36 and one only men.42 Six studies comprised patients with relatively early RA (disease duration < 5 years).32, 37, 40, 41, 43, 49 The included studies examined a wide variety of coping strategies (see supplementary table S4).

Methodological quality assessment The two reviewers agreed on 294 of 342 criteria (86%; κ = 0.71), representing good agreement.50 Disagreements, mainly due to reading errors or interpretation errors, mostly concerned the attrition rate, description of treatment subsequent to inclusion, and the validity of outcome measures (see supplementary table S5). In all, 10 studies were of ‘high’ quality (range 12 to 15)30-32, 36, 37, 39, 42, 44-46 and nine studies of ‘lower’ quality (range 8 to 11) (table 1).33-35, 38, 40, 41, 43, 47, 49 Limitations of the studies mostly concerned selection bias (e.g., method of recruitment, reasons for drop-out) and no adjustment for potential confounders (i.e., age, gender, disease duration).

Best-evidence synthesis Unadjusted bivariate correlations showed that baseline engagement coping was negatively correlated (r between 0.007-0.46, p values < 0.05) and baseline disengagement coping was positively correlated (r between 0.29-0.64, p values < 0.05) with psychological distress at follow-up (see supplementary table S4).

Table 2 displays the level of evidence for the longitudinal association between

primary and secondary control engagement coping, narrow disengagement coping, and negative and mixed emotion-focused coping with the course of depression, anxiety, and general distress. Overall, mid-level engagement coping and emotion-focused coping were not longitudinally associated with a change in depression and anxiety.

Conflicting evidence was found for the association of narrow disengagement

coping with subsequent changes of depression and anxiety. Five ‘high’ quality studies found mixed44, 45 or no associations36, 37, 39 between low-level helplessness and the

34


Figure 2 S election of studies.

2

Literature search in 6 electronic databases: PubMed, EMBASE, CINHAL, Scopus, PsycINFO, and Web of Science

Potentially relevant studies identified: Non-duplicate references screened on title & abstract by three reviewers (n=2605) Studies excluded based on selection criteria (n=2490) Full studies retrieved for more detailed evaluation by two reviewers (n=115)

Studies excluded (n=97): • Design (n=26) • Study population (n=8) • Follow-up < 6 months (n=5) • Outcome measure (n=14) • No psychological factor as defined (n=12) • No psychological factor as determinant (n=21) • No differentation in diagnostic subgroups (n=3) • No full-text article (n=8)

Studies meeting selection criteria (n=18+2)

Additional studies by hand search (n=2)

Duplicate study excluded (n=1) Studies included in review (n=19)

course of depression, whereas one ‘lower’ quality study49 found helplessness to be associated with an increase of depression and three other ‘lower’ quality studies 34, 41, 43 found no association. Two ‘high’ quality studies found that low-level helplessness39, 45 was associated with an increase in anxiety, whereas another ‘high’ quality study 36 found no association.

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Table 1 S tudy characteristics of 19 studies comprised of 14 cohorts included in the systematic review. First author (year)ref

Study population

Inclusion (I) / exclusion (E) criteria

Brekke et al. (2001)30A

Norway: Patients in Permanent Oslo RA Register

I: Diagnoses of RA according to 1987 ACR criteria, residential address in Oslo

Sample size / lost to follow-up (%) 1024 / 29%

E: Patients with juvenile arthritis (disease onset before age < 16 yr) Brekke et al. (2003)31A

Norway: Patients in Permanent Oslo RA Register

I: Diagnoses of RA according to 1987 ACR criteria, residential address in Oslo; date of birth ≥ 1926

306 / unclear

E: Patients with juvenile arthritis (disease onset before age < 16 yr) Brown et al. (1989)32B

USA: Patients recruited from rheumatology practices

I: Diagnosis of definite or classical RA according to criteria of the American Rheumatism Association (1957 ); age ≥ 18 yr; disease duration ≤ 7 yrs

366 / 21.6%

Covic et al. (2003)33

Australia: Patients recruited from 3 rheumatology practices (convenience sample)

I: Diagnosis of RA according to 1987 ACR criteria

157 / 16.6%

Curtis et al. (2004)34C

Ireland: Patients attending an outpatient clinic

Not reported

59 / 11.9%

Griffin et al. (2001)35

USA: Patients recruited from a rheumatology medical practice

I: Diagnosis of definite RA according to 1987 ACR criteria

56 / 25%

E: Any obvious cognitive impairment; known psychiatric diagnosis Groarke et al. (2005)36C

36

Ireland: Patients attending government funded rheumatology clinic

I: Diagnosis of RA according to 1987 ACR criteria; female only; no major co-morbid medical disease

75 / 12mo=21.4% 24mo=30.7%


2 Female Age, years (%) 79%

80%

75%

76%

100%

64%

100%

Disease duration, years

Mean ± SD

Mean ± SD

61.4 ± 14.6

12.1 ±11.0

Mean ± SD

Mean ± SD

53.3 ± 11.5

11.0 ± 9.3

Mean ± SD

Mean ± SD

50.9 ±13.3

3.3 ± 2.2

Mean ± SD

Mean ± SD

57.9 ± 12.2 (range 29-80)

13.27 ± 9.5 (range 6m-47yrs)

Mean ± SD

Mean ± SD

60; SD not reported

13; SD not reported

Mean ± SD

Median

55 ± 10

12 (range 8m -25yrs)

Mean ± SD

Mean ± SD

60.1 ± 12.1

12.6 ±10.8

Follow-up, months

Assessment of psychological distress (instrument)

Quality score

24

(1) Affect (AIMS2) (2) Mental health (SF36)

15

60

(1) Affect (AIMS2) (2) Mental health (SF36)

14

6

Depression (CES-D)

15

8

Depression (CES-D)

10

12

(1) Depression (AIMS) (2) Anxiety (AIMS) (3) Positive affect (PANAS) (4) Negative affect (PANAS)

11

9

Negative affect (PANAS)

11

(1) Depression (AIMS) (2) Anxiety (AIMS)

13

(1) 12 (2) 24

37

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Table 1 C ontinued. First author (year)ref

Study population


Keefe et al. (1989)49B

USA: Patients recruited from rheumatology practices

I: Diagnosis of definite or classical RA; age ≥ 18 yrs; disease duration ≤ 7 yrs

Krol et al. (1998)37

Netherlands: Patients recruited from patient files of practising rheumatologists

I: Diagnosis of RA according to 1987 ACR criteria; age between 20-71 yrs; disease duration < 4 yrs; no comorbid disease or handicap; patients living in sampling area

Sample size / lost to follow-up (%) 223 / unclear

292 / 27.1%

E: Patients with Steinbrocker’s functional grade IV Revenson & Felton (1989)38

USA: Patients recruited sequentially from rheumatology service of a large metropolitan hospital

I: Diagnosis of probable, definite, or classical RA by ACR criteria (1983); age ≥ 20 yrs; no psychiatric disorder

45 / 0%

Scharloo et al. (1999)39

Netherlands: Patients consecutively recruited from an university rheumatology outpatient clinic

I: Diagnosis of RA according to 1987 ACR criteria; disease duration ≥ 1 yr; fluency in Dutch language

83 / 14.5%

E: Patients with co-morbid serious or chronic disease (diabetes, coronary disease, cancer, psychiatric disorders, pulmonary disorders, psoriasis) Schiaffino et al. (1991)40D

USA: Patients recruited from rheumatic disease clinic and from associated rheumatologists' practices

I: Diagnosis of RA; age ≥ 18 yrs; disease duration < 2 yrs; ability to read/write in English; no history of psychiatric disorder

101 / 35.6%

Schiaffino & Revenson (1995)41D

USA: Patients recruited from rheumatic disease clinic and from associated rheumatologists' practices

I: Diagnosis of RA; age ≥ 18 yrs; disease duration < 2 yrs; ability to read/write in English; no history of psychiatric disorder

101 / 36.6%

38


Female Age, years (%)


Follow-up, months


Quality score

75%

52.7 ± 13.6

3.5 (SD not reported)

6

Depression (CES-D)

11

64%

Mean ± SD

Not reported

12

Depression (GHQ)

12

Mean ± SD

Mean ± SD

6-7

(1) Positive affect (ABS) (2) Negative affect (ABS)

10

63 ± 7 (range 48-78)

6±8

Mean ± SD

Mean ± SD

12

(1) Depression (HADS) (2) Anxiety (HADS)

12

52.2 ± 12.2

12.4 ± 8.5

Mean ± SD

Not reported

14

Depression (CES-D)

10

Not reported

18

Depression (CES-D)

8

53.4 ± 11.9 (range 21-71)

80%

75%

82%

51.1 ± 15 (range 18-80)

80%

Not reported

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Table 1 C ontinued. First author (year)ref

Study population


Sample size / lost to follow-up (%)

Schoenfeld-Smith et al. (1996)42

USA: Patients recruited consecutively from a Veteran Affairs hospital

I: Diagnosis of RA according to ACR criteria (1982)

Smith & Wallston (1992)43B

USA: Patients recruited from 4 rheumatology practices

I: Diagnosis of definite or classical RA; age ≥ 18 yrs; disease duration ≤ 7 yrs

239 / varies between 12mo=13.8% 36mo=34.4%

Smith et al. (1994)44

USA: Patients recruited from rheumatology clinics at an university medical center & Veterans Administration medical center

I: Diagnosis of definite or classical RA according to 1987 ACR criteria

92 / 22%

Treharne et al. (2007)45

UK: Patients recruited from outpatient clinics of two NHS trusts

I: Diagnosis of RA according to 1987 ACR criteria

van Lankveld et al. (2000)46

Netherlands: Patients randomly selected from rheumatology practices of 2 hospitals

I: Diagnosis of definitive or classical RA according to 1987 ACR criteria

109 / 26.6%

van Middendorp et al. (2005)47

Netherlands: Patients recruited from rheumatology divisions of 7 hospitals

I: Diagnosis of RA according to 1987 ACR criteria; age ≥ 18 yrs

66 / unclear

80 / 21%

E: History of organic brain syndrome; psychotic disorder; uncontrolled medical disorder; major communicative disorder; and illiteracy

154 / 6mo=8% 12mo=13%

Note. Superscript capital letters A-D refer to studies from one cohort. ABS, Bradburn’s Affect-Balance Scale; ACR, American College of Rheumatology; AIMS(2), Arthritis Impact Measurement Scale(2); BDI, Beck Depression Inventory; CES-D, Center for Epidemiologic Studies-Depression Scale; GHQ, General Health

40


Female Age, years (%) 0%

76%

60%

75%

41%

67%


Mean ± SD

Mean ± SD

60.7 ± 6.6

13.3 ± 9.9

Mean ± SD

Mean ± SD

50.5 ± 13.6

3.2 ± 2.3

Median

Median

62 (range 23-81)

15 (range 1-53)

Mean ± SD

Mean ± SD

55.4 ± 14.4 (range 21-88)

Not reported

Follow-up, months 6


Quality score

Psychological disability

12

(composite variable)

12*

Depression (CES-D)

10

47-50

Depressed mood (BDI)

12

(1) 6 (2) 12

(1) Depression (HADS) (2) Anxiety (HADS)

12

36

Distress (IRGL)

12

15

Negative affect

11

Stratified into: < 6 mo; 1-7 yrs; > 7 yrs

Mean ± SD

Mean ± SD

56.1 ± 11.5

13.3 ± 9.7 (range 1-42)

Mean ± SD

Mean ± SD

57.7 ± 11.6 (range 32-79)

12.1 ± 11.4 (range 0.2-52)

(composite variable)

Questionnaire; HADS, Hospital Anxiety and Depression Scale; IRGL, Impact of Rheumatic Diseases on General health and Lifestyle; NHS, UK National Health Service; PANAS: Positive Affect Negative Affect Scale. * Statistical analyses of interest over follow-up period of wave 1 – wave 3.

41

2

42

Studies

3 HQ studies

2 HQ studies 2 LQ studies

Anxiety

General Distress

2 HQ studies

1 HQ study 1 LQ study

Anxiety

General Distress


3 HQ studies 1 LQ study

1 HQ study 2 LQ studies

Depression

Anxiety

General Distress


2 HQ studies 1 LQ study

Depression

Secondary control engagement coping


Depression

Primary control engagement coping

Mid-level of Coping

Positive46 Positive35, positive38

No36, mixed39, positive45 No34

No36, no37, no39, mixed44, mixed45 No34, no41, no43, positive49

No46 No38

No39, no45

No39, no45 No41

Mixed30, no31 Negative38, no47

No36, no39, no45

No36, no37, no39, no45 No41 , negative43

Longitudinal associations

Moderate: narrow disengagement coping predicted an increase of general distress across time.

Conflicting: inconsistent association between narrow disengagement and changes of anxiety across time.

Conflicting: inconsistent association between narrow disengagement coping and changes of depression across time.

Limited: no association between secondary control engagement coping and changes of general distress across time.

Strong no: no association between secondary control engagement coping and changes of anxiety across time.

Strong no: no association between secondary control engagement coping and changes of depression across time.

Conflicting: inconsistent association between primary engagement coping and changes of general distress across time.

Strong no: no association between primary control engagement coping and changes of anxiety across time.

Strong no: no association between primary control engagement coping and changes of depression across time.

Level of evidence

Table 2 Level of evidence for mid-level coping as prognostic factor for psychological distress over time.

chapter 2

1 HQ study

Anxiety

3 LQ studies

No35, mixed38, no47

No39

No39

Conflicting: inconsistent association between negative emotionfocused coping and changes of general distress across time.

Limited: no association between mixed emotion-focused and changes of anxiety across time.

Limited: no association between mixed emotion-focused coping and changes of depression across time.

Note. Articles included in the best-evidence synthesis are cited. Three studies 33 40 42 only reported unadjusted associations and were left out of the best-evidence synthesis. HQ, high quality; LQ, low quality

General Distress

Negative emotion-focused coping

1 HQ study

Depression

Mixed emotion-focused coping


2

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Moderate evidence, resulting from one ‘high’ quality and two ‘lower’ quality studies, was found for an association between narrow disengagement coping and an increase of general distress. Specifically, the low-level coping categories avoidance35, 46 and wishful thinking38 were longitudinally associated with increased general distress. One ‘high’ quality study found that, after controlling for disease impact and disease status, baseline avoidant-oriented coping was associated with an increase in general distress at 3 years follow-up (β = 0.17, R2 = 2%, p < 0.05).46

Post hoc sensitivity analyses using a different cut-off score for study quality (cut-off:

≥ 10), level of coping (top level: engagement vs disengagement), and follow-up period (cut-off: 1 year) did not alter the outcomes of the best-evidence synthesis.

Discussion This systematic review of longitudinal cohort studies examined the prospective association between coping strategies and later psychological distress in RA. We found limited evidence that low-level disengagement coping strategies helplessness, avoidance, and wishful thinking were prospectively associated with an increase of general psychological distress. No evidence was found that engagement coping (e.g., approach-oriented coping strategies) was associated with changes in psychological distress.

In contrast to findings from previous cross-sectional studies,7, 11, 16, 17, 51 the baseline-

corrected longitudinal associations in our study suggest that approach-oriented coping is not associated with a decrease of psychological distress. Neither the potential protective factors problem solving, instrumental support, positive emotion regulation, distraction, and cognitive restructuring, nor the potential risk factors negative and mixed emotion focused coping were shown to be prospectively associated with a change in psychological distress. It has been suggested that it is the flexible use of a variety of coping strategies across situations that may be beneficial for adjustment to a chronic disease,52 perhaps especially in RA with its fluctuating and often unpredictable disease course. Coping flexibility involves having a broad repertoire of coping strategies, being aware of these coping options, and being able to shift to a different coping strategy according to the personal goals and situational demands. Coping flexibility is positively associated with psychological well-being,53-55, but longitudinal associations with psychological distress are as yet not studied. Our review suggests that the classic trait-like approach-oriented coping is not longitudinally associated with a decrease of psychological distress in RA.

44


Previous cross-sectional studies consistently demonstrated that avoidant-oriented coping is linked to poor psychological well-being.7,

16, 18, 56

Limited and somewhat

inconsistent evidence in our review suggests that avoidant-oriented coping (i.e., disengagement coping) is also prospectively associated with increased general distress. Avoidant-oriented coping was not prospectively associated with questionnaire scores of depression or anxiety that might reflect the more pathological and subclinical levels of a mood disorder than questionnaire scores of general distress that reflect the broad range from no distress to pathological distress. The low-level categories helplessness, avoidance, and wishful thinking were shown to be potential risk factors for psychological distress. We found some indications for the maladaptive role of cognitive coping styles and patterns, such as pessimism, catastrophising, and cognitive distortions. The role of negative thinking and biases, such as pain catastrophising and rumination in the development and maintenance of psychological disorders has been well documented.57-60 Psychological interventions aimed at modifying avoidant-oriented cognitive-behavioural coping patterns have demonstrated clinically relevant reductions of psychological distress in chronic pain conditions.61, 62 Future clinical studies are needed to examine whether a similar treatment approach will be efficacious in RA.

Our modest findings reflects the gap between cross-sectional and prospective

coping research. Most coping research relied on between-person, cross-sectional designs and instruments assessing general trait-like coping across situations, limiting meaningful clinical inferences. Also the studies included in our review evaluated general trait-like coping (e.g., Ways of Coping Checklist, COPE, Utrecht Coping List). To examine the complex relationship between coping and adjustment outcomes, we are in need of new approaches to coping research. In-depth longitudinal and within-person research designs (e.g., daily diary studies) using outcome criteria that are linked to the needs and goals of the person (e.g., maintaining autonomy, social relationships, or valued activities) are useful to understand the prospective association between coping and distress. Furthermore, instruments specially developed and validated for use in particular contexts, and instruments assessing the flexible use of coping strategies will be needed to examine the complex relationship between coping and adjustment outcomes.63, 64

There are limitations to this review, some of which reflect shortcomings of the

included studies or methodological choices we made. The outcome of our review will have been affected by the heterogeneity of studies in sample size, patient characteristics, follow-up period, measures, and statistical techniques. Besides, and perhaps in interaction with coping, disease activity 3 and treatments such as biologicals8 or glucocorticoid treatment65 may have an impact on psychological distress. Only a few studies in our review adjusted for potential confounding by disease activity and

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pharmacological treatment. This may have biased the outcomes of our study.

The taxonomy of coping we used to categorise the coping strategies and our choice

to summarise and synthesise the findings at the mid-level of the taxonomy may have influenced the outcomes of this review. Classifying coping strategies into conceptually clear and functionally distinct categories was a challenging task. Some coping scales were left out of the best-evidence synthesis, because a combination of several coping strategies was analysed. A post hoc sensitivity analysis synthesising findings from the top level of the coping taxonomy, however, did not alter the level of evidence demonstrating the robust findings of the current review. In sum, the heterogeneity of the included studies and the methodological choices (e.g., classification of dissimilar coping strategies into core categories of coping) precludes firm conclusions about the longitudinal association between coping and the later course of distress.

This review indicates that coping is hardly associated with a later change in

psychological distress. Limited evidence suggests that only avoidant-oriented coping but not approach-oriented coping in RA gives an indication of who may and may not show a change in psychological distress. Of the examined coping strategies, some support was found for the usefulness of identifying avoidant-oriented coping strategies among patients in routine clinical practice as these coping strategies may forecast poor adjustment to RA. Future experimental and clinical intervention studies need in-depth longitudinal and within-subject designs to examine the complex relationship between coping and psychological distress.

46


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48. Brown GK, Nicassio PM. Development of a questionnaire for the assessment of active and passive coping strategies in chronic pain patients. Pain 1987;31:53-64. 49. Keefe FJ, Brown GK, Wallston KA, Caldwell DS. Coping with rheumatoid arthritis pain: catastrophizing as a maladaptive strategy. Pain 1989;37:51-56. 50. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977;33:159-174. 51. Stanton AL, Revenson TA, Tennen H. Health psychology: psychological adjustment to chronic disease. Ann Rev Psychol 2007;58:565-592. 52. Zeidner M, Saklofske D. Adaptive and maladaptive coping. In: Zeidner M, Endler NS, eds. Handbook of coping: theory, research, applications. New York: John Wiley & Sons. 1996;505-531. 53. Cheng C. Assessing coping flexibility in real-life and laboratory settings: a multimethod approach. J Pers Soc Psychol 2001;80:814-833. 54. Fresco DM, Williams NL, Nugent NR. Flexibility and negative affect: examining the associations of explanatory flexibility and coping flexibility to each other and to depression and anxiety. Cognit Ther Res 2006;30:201-210. 55. Lester N, Smart L, Baum A. Measuring coping flexibility. Psychol Health 1994;9:409-424. 56. Zautra AJ, Manne S. Coping with rheumatoid arthritis: a review of a decade of research. Ann Behav Med 1992;14:31-39. 57. Edwards RR, Bingham CO, III, Bathon J, Haythornthwaite JA. Catastrophizing and pain in arthritis, fibromyalgia, and other rheumatic diseases. Arthritis Rheum 2006;55:325-332. 58. Nolen-Hoeksema S. The role of rumination in depressive disorders and mixed anxiety/depressive symptoms. J Abnorm Psychol 2000;109:504-511. 59. Robinson MS, Alloy LB. Negative cognitive styles and stress-reactive rumination interact to predict depression: a prospective study. Cognit Ther Res 2003;27:275-291. 60. Soo H, Burney S, Basten C. The role of rumination in affective distress in people with a chronic physical illness: a review of the literature and theoretical formulation. J Health Psychol 2009;14:956-966. 61. Thieme K, Flor H, Turk DC. Psychological pain treatment in fibromyalgia syndrome: efficacy of operant behavioural and cognitive behavioural treatments. Arthritis Res Ther 2006;8:R121. 62. Van Koulil S, van Lankveld W, Kraaimaat FW et al. Tailored cognitive-behavioral therapy and exercise training for high-risk fibromyalgia patients. Arthritis Care Res 2010;in press. 63. Coyne JC, Racioppo MW. Never the Twain shall meet? Closing the gap between coping research and clinical intervention research. Am Psychol 2000;55:655-664. 64. Tennen H, Affleck G, Armeli S, Carney MA. A daily process approach to coping. Linking theory, research, and practice. Am Psychol 2000;55:626-636. 65. Jacobs JW, Geenen R, Evers AW, van Jaarsveld CH, Kraaimaat FW, Bijlsma JW. Short term effects of corticosteroid pulse treatment on disease activity and the wellbeing of patients with active rheumatoid arthritis. Ann Rheum Dis 2001;60:61-64.

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Supplementary tables S1-S5

chapter 2

Table S1 Search strategies used and search results. Electronic database

Keywords

Hits

Web of Science #1: TS=(prospective studies OR longitudinal studies OR cohort studies OR follow-up studies OR observational studies OR predictor* OR prognos* OR prognostic factor* OR course OR determinant*) Databases=SCI-EXPANDED, SSCI, A&HCI Timespan=All Years #2: TS=(rheumatic diseases OR arthritis OR arthrit* OR rheumatoid arthritis OR inflammatory rheumatic diseases) NOT TS=(fibromyalgia OR osteoarthritis) Databases=SCI-EXPANDED, SSCI, A&HCI Timespan=All Years #3: TS=(adaptation, psychological OR adjustment OR coping* OR cognitions OR beliefs) Databases=SCI-EXPANDED, SSCI, A&HCI Timespan=All Years #4: TS=(distress OR depression OR depressed mood OR depressive symptoms OR anxiety OR affect OR affective symptoms OR negative affect OR negative mood OR emotions) Databases=SCI-EXPANDED, SSCI, A&HCI Timespan=All Years #5: #1 AND #2 #6: #3 OR #4 #7: #5 AND #6

1566

PubMed

723

52

#1: prospective studies[MeSH] or longitudinal studies[MeSH] OR cohort studies[MeSH] or follow-up studies [MeSH] OR observational studies or predictor* OR prognos* or prognostic factor* OR course OR determinant* #2: rheumatic diseases[MeSH] OR arthritis[MeSH] OR arthrit* OR rheumatoid arthritis OR "inflammatory rheumatic disease*" #3: fibromyalgia OR osteoarthritis #4: Adaptation, Psychological[MeSH] OR Coping* OR Cognitions OR Beliefs #5: distress OR depression[MeSH] or depression OR depressed mood OR depressive symptoms OR anxiety[MeSH] OR anxiety OR affect[MeSH] or affective symptoms OR negative affect OR negative mood OR emotions[MeSH] #6: #1 AND #2 #7: #6 NOT #3 #8: #4 OR #5 #9: #7 AND #8 Limits: Humans, English, French, German, Dutch, All Adult: 19+ years


Table S1 Continued. Electronic database

Keywords

Hits

Scopus

((((TITLE-ABS-KEY(prospective studies) OR TITLE-ABSKEY(longitudinal studies) OR TITLE-ABS-KEY(cohort studies) OR TITLE-ABS-KEY("follow-up" studies) OR TITLE-ABSKEY(observational studies) OR TITLE-ABS-KEY(predictor*) OR TITLE-ABS-KEY(prognos*) OR TITLE-ABS-KEY(prognostic factor*) OR TITLE-ABS-KEY(determinant*))) AND ((TITLE-ABSKEY(rheumatic diseases) OR TITLE-ABS-KEY(arthritis) OR TITLE-ABS-KEY(arthrit*) OR TITLE-ABS-KEY(rheumatoid arthritis) OR TITLE-ABS-KEY("inflammatory rheumatic disease*")))) AND NOT ((TITLE-ABS-KEY(fibromyalgia) OR TITLE-ABSKEY(osteoarthritis)))) AND (((TITLE-ABS-KEY(adaptation psychological) OR TITLE-ABS-KEY(adjustment) OR TITLEABS-KEY(coping*) OR TITLE-ABS-KEY(cognitions) OR TITLE-ABS-KEY(beliefs))) OR ((TITLE-ABS-KEY(distress) OR TITLE-ABS-KEY(depression) OR TITLE-ABS-KEY(depressed mood) OR TITLE-ABS-KEY(depressive symptoms) OR TITLEABS-KEY(anxiety) OR TITLE-ABS-KEY(affect) OR TITLEABS-KEY(affective symptoms) OR TITLE-ABS-KEY(negative affect) OR TITLE-ABS-KEY(negative mood) OR TITLE-ABSKEY(emotions)))) AND (LIMIT-TO(DOCTYPE, "ar") OR LIMITTO(DOCTYPE, "re")) AND (LIMIT-TO(LANGUAGE, "English") OR LIMIT-TO(LANGUAGE, "German") OR LIMIT-TO(LANGUAGE, "French") OR LIMIT-TO(LANGUAGE, "Dutch")) AND (LIMITTO(EXACTKEYWORD, "Adult"))

552

PsycINFO

#1: (prospective studies or longitudinal studies or followup studies or cohort studies or risk factors or prognosis or disease course).sh. #2: ((rheumatoid arthritis or arthritis) not fibromyalgia not osteoarthritis).sh. #3: (adjustment or emotional adjustment or coping behavior or cognitions or attitudes).sh. #4: (emotional states or anxiety or distress or depression emotion).sh. #5: #1 AND #2 #6: #3 OR #4 #6: #5 AND #6

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Table S1 Continued. Electronic database

Keywords

EMBASE

#1: (prospective studies or longitudinal studies or followup studies or cohort studies or risk factors or prognosis or disease course).sh. #2: ((rheumatoid arthritis or arthritis) not fibromyalgia not osteoarthritis).sh. #3: (adjustment or emotional adjustment or coping behavior or cognitions or attitudes).sh. #4: (emotional states or anxiety or distress or depression emotion).sh. #5: #1 AND #2 #6: #3 OR #4 #6: #5 AND #6

37

CINAHL

#1: MH prospective studies or MH nonexperimental studies OR TX predictor* or TX prognos* or TX prognostic factor* or TX course or TX determinant* #2: MH rheumatic diseases or TX arthritis or TX arthrit* or MH arthritis, rheumatoid or TX “inflammatory rheumatic diseases” not MH fibromyalgia NOT MH osteoarthritis #3: MH adaptation, psychological or MH coping or MH cognition or MH health beliefs #4: MH depression or MH affect or MH anxiety or MH emotions or MH symptom distress #5: #1 AND #2 #6: #3 OR #4 #7: #5 AND #6 – Limiters Abstract Available; Exclude MEDLINE records; Age Groups: All Adult

25

54

Hits


2

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Table S2 E xplanation of quality assessment criteria. Study population A. Are the study setting and geographic location stated? Positive, when both setting (e.g., population, general practice, hospital) and geographical location (e.g., country, district, city) are described. B. Are eligibility criteria adequately described? Positive, when in addition to diagnosis of study population other inclusion criteria (e.g., age, disease duration) and/or exclusion criteria (e.g., co-morbidities) are described in the study or in other peer-reviewed publications of the same cohort. C. Is the method of recruitment adequately described? Positive, when stages of the recruitment procedure are clearly described. Included quantitative statement of numbers in every stage of the recruitment procedure. D. Is demographic and disease-related information adequately stated? Positive, when at least descriptive data (e.g., mean/SD) of age, gender, diagnosis, and disease duration at baseline are presented. Method & Follow-up of patients E. Are methods of data collection on both assessment points (baseline and follow-up) adequately described? Positive, when methods of data collection is clearly described. For instance, descriptions of tools (e.g., questionnaires, physical examination) and processes (e.g., interview, telephone, postal) at both baseline and follow-up assessment. F.

Are methods of data collection on both assessment points (baseline and follow-up) identical?

G. Is the sample size of the study population at follow-up ≥ 100? H. Is the attrition rate (loss to follow-up/drop-outs) less than 20% at follow-up ≥ 6 months OR less than 30% at follow-up > 12 months? Positive, when the total number of participants was < 20% at follow-up ≥ 6 months OR < 30% at follow-up > 12 months compared to the number of participants at baseline. For a follow-up period between 6-12 months, attrition percentage of the individual study should be compared to attrition percentage closest to one of the follow-up periods (6 or 12 months) described above. I.

Is information on completers versus loss to follow-up/drop-outs presented? Positive, when completers are compared to participants who dropped out or were loss to follow-up on important study variables (e.g., age, disease duration) at baseline.

J.

Are reasons for loss to follow-up/drop-out adequately described? Positive, when broad reasons for loss to follow-up/drop-out are presented and specified at every assessment point.

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Table S2 Continued.

2

Outcome and prognostic variables K. Is a standardised measure for the outcome variable used? Positive, when evidence for the reproducibility of the measurement tool for psychological distress was mentioned in the study or in other peer-reviewed publications. L. Are standardised measures for psychological prognostic variables used? Positive, when evidence for the reproducibility of the measurement tools for the coping and cognition variables were mentioned in the study or in other peer-reviewed publications. M. Is the outcome measure used validated for chronic musculoskeletal pain disorders? Positive, when evidence for the psychometric qualities and validity of the outcome measure in a chronic musculoskeletal pain population (e.g., rheumatoid arthritis, chronic low back pain) is mentioned in the study or in other peer-reviewed publications). Analysis (and data presentation) N. Are descriptive data of outcome measure and prognostic variables adequately described? Positive, when at least at baseline appropriate descriptive statistics (e.g., frequencies/ percentages, mean/SD, median/Interquartile range, confidence intervals) are presented for both psychological distress (i.e. outcome) and coping/cognition variables (i.e., prognostic variables). O. Is the sample size (n) adequate in relation to the number of prognostic variables (K) in the statistical analyses? Positive, when at least ten participants are examined for each predictor (i.e., ratio n:K exceeds 10:1). P.

Are appropriate multivariate analysis techniques conducted? Positive, when multivariate analyses are conducted adjusted for baseline level of psychological distress (i.e., outcome).

Q. Are confounders accounted for in the statistical analyses? Positive, when – if appropriate – age, gender, and disease duration are adjusted for in the multivariate statistical analyses. Treatment subsequent to inclusion in cohort R. Are pharmacological and/or non-pharmacological treatments in study population described? Positive, when pharmacological and/or non-pharmacological treatments that potentially influence psychological distress (i.e., outcome) or coping and/or cognition variables (i.e., prognostic variables) are described. For instance, a psychological intervention, antidepressants etc. Note. To answer the abovementioned criteria, information was obtained from the original study included in this review or from other peer-reviewed publications of the same study.

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Table S3 Hierarchical model of coping. Coping

Explanation

E

Broad Engagement coping

Broad category of approach-oriented responses directed towards the stressor or one’s reactions to the stressor.

E1

Primary control engagement coping

Active attempts to control or change a bad situation or one’s emotional reaction to the situation. A.k.a. assimilation.

E1.1

Problem solving/ problem focused

Active attempts to resolve a stressor through planning, generation of possible solutions, logical analysis and evaluation of options, implementing solutions, and staying organised and on task.

E1.2

Instrumental support

Problem focused social support, including seeking help, resources, or advice about possible solutions to problems.

E1.3

Positive emotion regulation

Active attempts to decrease negative emotions through controlled use of strategies such as relaxation or exercise, or modulating expressions to emotion to ensure that feelings are expressed at an appropriate time in a constructive manner.

E2

Secondary control engagement coping

Attempts to adapt to a stressor to create a better fit between the self and the environment. A.k.a. accommodation.

E2.1

Distraction

Taking a temporary break from a stressful situation by engaging in an enjoyable activity. Distraction does NOT involve attempts to avoid or deny problems.

E2.2

Cognitive restructuring

Finding a more positive or realistic way to think about a bad situation, looking on the bright sight, identifying benefits arising from the situation (e.g., personal growth), or finding a humorous side to the stressor.

E3

Negative emotion focused coping

Emotion regulation and expression strategies that suggest loss of control (e.g., hitting, throwing objects), distress (e.g., crying, yelling, self-blame), or hostility towards others.

E4

Mixed emotion focused coping

Responses to emotional distress involving a mix of controlled and uncontrolled emotion regulation and expression strategies.

D

Broad Disengagement Broad category of responses oriented away from the Coping stressor or one’s reactions to the stressor. Historically, broad disengagement scales have included distraction, substance use, or symptoms of distress.

D1


58

Disengagement responses excluding distraction, substance use, or symptoms of distress


Table S3 C ontinued. D1.1

Avoidance

Attempts to avoid the problem, reminders of the problem, thoughts of the problem, or emotions related to the problem

D1.2

Helplessness

Responses involving giving up or relinquishment of control. Including passivity, confusion, cognitive interference or exhaustion, dejection, and pessimism.

D1.3

Wishful thinking, fantasy Hoping to be magically rescued from the situation or for the situation to disappear, fantasising about unlikely outcomes, wishing that you or the situation were radically different.

Note. Adapted from Connor-Smith & Flachsbart. J Pers Soc Psychol 2007;93:1082-1107

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Table S4 C oping strategies grouped into three levels of the coping taxonomy, psychological distress and coping measures, and the association between coping and distress. Study, First Author

Coping measure (instrument)

Low-level coping: specific coping family

Mid-level coping: Top level coping: Primary control, E versus D Secondary control, Narrow disengagement

Brekke (2001)30

self-efficacy pain (ASE)

n.a.

primary control engagement coping

E

Brekke (2001)30

self-efficacy symptoms n.a. (ASE)


E

Brekke (2003)31

self-efficacy symptoms n.a. (ASE)


E

Brown (1989)32

passive coping (PMI)

n.a.

n.a.

D

Brown (1989)32

active coping

n.a.

n.a.

E

Covic (2003)33

helplessness (AHI)

helplessness

narrow disengagement D coping

Covic (2003)33

passive coping (PCSQ)

n.a.

n.a.

(comprises subscales: catastrophizing & praying/hoping)

60

D


2 Distress measure (instrument)

Bivariate associations Multivariate associations (baseline coping-follow- adjusted for distress at baseline up distress)

Rating of association

Affect (AIMS2)

r = -0.007, p=0.05

0

n.s Regression model adjusted for: baseline affect, age, sex, educational level and disease duration,

Affect (AIMS2)

r = -0.14, p