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Psychological health and well-being in systemic sclerosis: State of the science and consensus research agenda†

  1. Brett D. Thombs1,*,
  2. Wim van Lankveld2,
  3. Marielle Bassel3,
  4. Murray Baron1,‡,
  5. Robert Buzza4,
  6. Shirley Haslam4,
  7. Jennifer A. Haythornthwaite5,
  8. Marie Hudson1,
  9. Lisa R. Jewett6,
  10. Ruby Knafo6,
  11. Linda Kwakkenbos2,
  12. Vanessa L. Malcarne7,
  13. Katherine Milette3,
  14. Sarosh J. Motivala8,
  15. Evan G. Newton6,
  16. Warren R. Nielson9,
  17. Marion Pacy4,
  18. Ilya Razykov6,
  19. Orit Schieir10,
  20. Suzanne Taillefer3,‡,
  21. Maureen Worron-Sauve4

Article first published online: 16 MAR 2010

DOI: 10.1002/acr.20187

Issue

Arthritis Care & Research

Arthritis Care & Research

Volume 62, Issue 8, pages 1181–1189, August 2010

Additional Information

How to Cite

Thombs, B. D., van Lankveld, W., Bassel, M., Baron, M., Buzza, R., Haslam, S., Haythornthwaite, J. A., Hudson, M., Jewett, L. R., Knafo, R., Kwakkenbos, L., Malcarne, V. L., Milette, K., Motivala, S. J., Newton, E. G., Nielson, W. R., Pacy, M., Razykov, I., Schieir, O., Taillefer, S. and Worron-Sauve, M. (2010), Psychological health and well-being in systemic sclerosis: State of the science and consensus research agenda. Arthritis Care Res, 62: 1181–1189. doi: 10.1002/acr.20187

Author Information

  1. 1

    McGill University and Jewish General Hospital, Montreal, Quebec, Canada

  2. 2

    Sint Maartenskliniek Nijmegen, Nijmegen, The Netherlands

  3. 3

    Jewish General Hospital, Montreal, Quebec, Canada

  4. 4

    Scleroderma Society of Canada, Ontario, Canada

  5. 5

    Johns Hopkins University School of Medicine, Baltimore, Maryland

  6. 6

    McGill University, Montreal, Quebec, Canada

  7. 7

    San Diego State University, San Diego, California

  8. 8

    University of California, Los Angeles

  9. 9

    University of Western Ontario and St. Joseph's Health Care, London, Ontario, Canada

  10. 10

    University of Toronto, Toronto, Ontario, Canada

  1. ‡

    Dr Baron is the director and Dr. Taillefer is the national coordinator of the Canadian Scleroderma Research Group

*Jewish General Hospital, 4333 Cote Ste Catherine Road, Montreal, Quebec H3T 1E4, Canada

  1. †

    The contents are solely the responsibility of the authors and do not necessarily represent the official views of NCCAM.

  2. ‡

    Dr Baron is the director and Dr. Taillefer is the national coordinator of the Canadian Scleroderma Research Group

Publication History

  1. Issue published online: 3 AUG 2010
  2. Article first published online: 16 MAR 2010
  3. Manuscript Accepted: 5 MAR 2010
  4. Manuscript Received: 14 JAN 2010

Funded by

  • The meeting, Improving Health and Well-Being in Scleroderma: Establishing a Collaborative Behavioral Health Research Agenda, and the drafting of this article were funded by a Meetings, Planning, and Dissemination grant from the Canadian Institutes of Health Research. Grant Number: MHA-90886
  • New Investigator awards from the Canadian Institutes of Health Research
  • Établissement de Jeunes Chercheurs awards from the Fonds de la Recherche en Santé du Québec
  • Canadian Institutes of Health Research. Grant Number: QNT-83518
  • Scleroderma Society of Canada
  • Scleroderma Ontario
  • Sclérodermie Québec
  • Scleroderma Association of British Columbia
  • Scleroderma Society of Southern Alberta
  • Scleroderma Society of Saskatchewan
  • Scleroderma Society of Manitoba
  • Cure Scleroderma Foundation
  • Pfizer Pharmaceuticals
  • Actelion Pharmaceuticals
  • Inova Diagnostics
  • Ontario Arthritis Society
  • National Center for Complementary and Alternative Medicine at the National Institutes of Health. Grant Number: R24-AT004641
  • Canadian Scleroderma Research Group Studentship (Canadian Institutes of Health Research Strategic Training Initiative in Health Research). Grant Number: SKI-83345
  • Canadian Institutes of Health Research Frederick Banting and Charles Best Canada Graduate Scholarships Master's award
  • Canadian Scleroderma Research Group Studentship (Canadian Institutes of Health Research Strategic Training Initiative in Health Research). Grant Number: SKI-83345
  • Canadian Institutes of Health Research Studentship award
  • Canadian Scleroderma Research Group Studentship (Canadian Institutes of Health Research Strategic Training Initiative in Health Research). Grant Number: SKI-83345
  • Fonds de la Recherche en Santé du Québec Bourse de Formation, Formation Maîtrise award

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REFERENCES

  • 1
    Seibold J. Scleroderma. In: HarrisED, BuddRC, FiresteinGS, GenoveseMC, SergentJS, RuddyS, et al, editors. Kelley's textbook of rheumatology. 7th ed. Philadelphia: Elsevier; 2005. p. 1279–308.
  • 2
    Wigley FM, Hummers LK. Clinical features of systemic sclerosis. In: HochbergMC, SilmanAJ, SmolenJS, WeinblattME, WeismannWH, editors. Rheumatology. 3rd ed. Philadelphia: Mosby; 2003. p. 1463–80.
  • 3
    Mayes MD, Lacey JV Jr, Beebe-Dimmer J, Gillespie BW, Cooper B, Laing TJ, et al. Prevalence, incidence, survival, and disease characteristics of systemic sclerosis in a large US population. Arthritis Rheum 2003; 48: 2246–55.
    Direct Link:
  • 4
    Mayes MD. Scleroderma epidemiology. Rheum Dis Clin North Am 1996; 22: 751–64.
  • 5
    Evans DL, Charney DS, Lewis L, Golden RN, Gorman JM, Krishnan KR, et al. Mood disorders in the medically ill: scientific review and recommendations. Biol Psychiatry 2005; 58: 175–89.
  • 6
    Kiecolt-Glaser JK, McGuire L, Robles TF, Glaser R. Emotions, morbidity, and mortality: new perspectives from psychoneuroimmunology. Annu Rev Psychol 2002; 53: 83–107.
  • 7
    DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: meta-analysis of the effects of anxiety and depression on patient adherence. Arch Intern Med 2000; 160: 2101–7.
  • 8
    Glassman AH, Helzer JE, Covey LS, Cottler LB, Stetner F, Tipp JE, et al. Smoking, smoking cessation, and major depression. JAMA 1990; 264: 1546–9.
  • 9
    Ziegelstein RC, Fauerbach JA, Stevens SS, Romanelli J, Richter DP, Bush DE. Patients with depression are less likely to follow recommendations to reduce cardiac risk during recovery from a myocardial infarction. Arch Intern Med 2000; 160: 1818–23.
  • 10
    Thombs BD, Taillefer SS, Hudson M, Baron M. Depression in patients with systemic sclerosis: a systematic review of the evidence. Arthritis Rheum 2007; 57: 1089–97.
    Direct Link:
  • 11
    Thombs BD, Hudson M, Schieir O, Taillefer SS, Baron M, and the Canadian Scleroderma Research Group. Reliability and validity of the Center for Epidemiologic Studies Depression Scale in patients with systemic sclerosis. Arthritis Rheum 2008; 59: 438–43.
    Direct Link:
  • 12
    Milette K, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. Comparison of the PHQ-9 and CES-D depression scales in systemic sclerosis: internal consistency reliability, convergent validity, and clinical correlates. Rheumatology (Oxford) 2010; 49: 789–96.
  • 13
    Thombs BD, Hudson M, Taillefer SS, Baron M, and the Canadian Scleroderma Research Group. Prevalence and clinical correlates of symptoms of depression in patients with systemic sclerosis. Arthritis Rheum 2008; 59: 504–9.
    Direct Link:
  • 14
    Beretta L, Astori S, Ferrario E, Caronni M, Raimondi M, Scorza R. Determinants of depression in 111 Italian patients with systemic sclerosis. Reumatismo 2006; 58: 219–25. In Italian.
  • 15
    Nietert PJ, Mitchell HC, Bolster MB, Curran MY, Tilley BC, Silver RM. Correlates of depression, including overall and gastrointestinal functional status, among patients with systemic sclerosis. J Rheumatol 2005; 32: 51–7.
  • 16
    Richards H, Herrick A, Griffin K, Gwilliam P, Fortune D. Psychological adjustment to systemic sclerosis: exploring the association of disease factors, functional ability, body-related attitudes and fear of negative evaluation. Psychol Health Med 2004; 9: 29–39.
  • 17
    Matsuura E, Ohta A, Kanegae F, Haruda Y, Ushiyama O, Koarada S, et al. Frequency and analysis of factors closely associated with the development of depressive symptoms in patients with scleroderma. J Rheumatol 2003; 30: 1782–7.
  • 18
    Benrud-Larson LM, Haythornthwaite JA, Heinberg LJ, Boling C, Reed J, White B, et al. The impact of pain and symptoms of depression in scleroderma. Pain 2002; 95: 267–75.
  • 19
    Roca RP, Wigley FM, White B. Depressive symptoms associated with scleroderma. Arthritis Rheum 1996; 39: 1035–40.
    Direct Link:
  • 20
    Van Lankveld W, Teunissen H, Naring G, Vonk M, van den Hoogen F. Social support, disease-related cognitions and coping as predictors of depressed mood in systemic sclerosis. Cognitive Ther Res 2008; 32: 434–47.
  • 21
    Impens AJ, Rothman J, Schiopu E, Cole JC, Dang J, Gendrano N, et al. Sexual activity and functioning in female scleroderma patients. Clin Exp Rheumatol 2009; 27: S38–43.
  • 22
    Hyphantis TN, Tsifetaki N, Pappa C, Voulgari PV, Siafaka V, Bai M, et al. Clinical features and personality traits associated with psychological distress in systemic sclerosis patients. J Psychosom Res 2007; 62: 47–56.
  • 23
    Malcarne VL, Greenbergs HL. Psychological adjustment to systemic sclerosis. Arthritis Care Res 1996; 9: 51–9.
    Direct Link:
  • 24
    Hansdottir I, Malcarne VL, Furst DE, Weisman MH, Clements PJ. Relationships of positive and negative affect to coping and functional outcomes in systemic sclerosis. Cognitive Ther Res 2004; 28: 593–610.
  • 25
    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: 141–53.
  • 26
    Swain MG. Fatigue in chronic disease. Clin Sci 2000; 99: 1–8.
  • 27
    Hewlett S, Cockshott Z, Byron M, Kitchen K, Tipler S, Pope D, et al. Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored. Arthritis Rheum 2005; 53: 697–702.
    Direct Link:
  • 28
    Flowers N, Wolfe F. What do rheumatologists do in their practices? [abstract]. Arthritis Rheum 1998; 41 Suppl: S337.
  • 29
    Richards HL, Herrick AL, Griffin K, Gwilliam PD, Loukes J, Fortune DG. Systemic sclerosis: patients' perceptions of their condition. Arthritis Rheum 2003; 49: 689–96.
    Direct Link:
  • 30
    Sandusky SB, McGuire L, Smith MT, Wigley FM, Haythornthwaite JA. Fatigue: an overlooked determinant of physical function in scleroderma. Rheumatology (Oxford) 2009; 48: 165–9.
  • 31
    Van Lankveld WG, Vonk MC, Teunissen H, van den Hoogen FH. Appearance self-esteem in systemic sclerosis: subjective experience of skin deformity and its relationship with physician-assessed skin involvement, disease status and psychological variables. Rheumatology (Oxford) 2007; 46: 872–6.
  • 32
    Sandqvist G, Eklund M. Daily occupations: performance, satisfaction and time use, and relations with well-being in women with limited systemic sclerosis. Disabil Rehabil 2008; 30: 27–35.
  • 33
    Sandqvist G, Scheja A, Eklund M. Working ability in relation to disease severity, everyday occupations and well-being in women with limited systemic sclerosis. Rheumatology (Oxford) 2008; 47: 1708–11.
  • 34
    Hudson M, Steele R, Lu Y, Thombs BD, Canadian Scleroderma Research Group, Baron M. Work disability in systemic sclerosis. J Rheumatol 2009; 36: 2481–6.
  • 35
    Smets EM, Garssen B, Bonke B, De Haes JC. The Multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue. J Psychosom Res 1995; 39: 315–25.
  • 36
    Thombs BD, Bassel M, McGuire L, Smith MT, Hudson M, Haythornthwaite JA. A systematic comparison of fatigue levels in systemic sclerosis with general population, cancer and rheumatic disease samples. Rheumatology (Oxford) 2008; 47: 1559–63.
  • 37
    Thombs BD, Hudson M, Bassel M, Taillefer SS, Baron M, and the Canadian Scleroderma Research Group. Sociodemographic, disease, and symptom correlates of fatigue in systemic sclerosis: evidence from a sample of 659 Canadian Scleroderma Research Group Registry patients. Arthritis Rheum 2009; 61: 966–73.
    Direct Link:
  • 38
    Prado GF, Allen RP, Trevisani VM, Toscano VG, Earley CJ. Sleep disruption in systemic sclerosis (scleroderma) patients: clinical and polysomnographic findings. Sleep Med 2002; 3: 341–5.
  • 39
    Cella D, Peterman A, Passik S, Jacobsen P, Breitbart W. Progress toward guidelines for the management of fatigue. Oncology 1998; 12: 369–77.
  • 40
    Dantzer R, Kelley KW. Twenty years of research on cytokine-induced sickness behavior. Brain Behav Immun 2007; 21: 153–60.
  • 41
    Steen V. Targeted therapy for systemic sclerosis. Autoimmun Rev 2006; 5: 122–4.
  • 42
    Mock V, Atkinson A, Barsevick A, Cella D, Cimprich B, Cleeland C, et al. NCCN practice guidelines for cancer-related fatigue. Oncology 2000; 14: 151–61.
  • 43
    Sokka T. Assessment of pain in patients with rheumatic diseases. Best Pract Res Clin Rheumatol 2003; 17: 427–49.
  • 44
    Katz WA, Rothenberg R. Section 2: the importance of improving function in patients with pain. J Clin Rheumatol 2005; 11: S6–9.
  • 45
    Heiberg T, Kvien TK. Preferences for improved health examined in 1,024 patients with rheumatoid arthritis: pain has highest priority. Arthritis Rheum 2002; 47: 391–7.
    Direct Link:
  • 46
    Suarez-Almazor ME, Kallen MA, Roundtree AK, Mayes M. Disease and symptom burden in systemic sclerosis: a patient perspective. J Rheumatol 2007; 34: 1718–26.
  • 47
    Schieir O, Thombs BD, Hudson M, Boivin JF, Steele R, Bernatsky S, et al, and the Canadian Scleroderma Research Group. Prevalence, severity, and clinical correlates of pain in patients with systemic sclerosis. Arthritis Care Res (Hoboken) 2010; 62: 409–17.
    Direct Link:
  • 48
    Danieli E, Airo P, Bettoni L, Cinquini M, Antonioli CM, Cavazzana I, et al. Health-related quality of life measured by the Short Form 36 (SF-36) in systemic sclerosis: correlations with indexes of disease activity and severity, disability, and depressive symptoms. Clin Rheumatol 2005; 24: 48–54.
  • 49
    Johnson SR, Glaman DD, Schentag CT, Lee P. Quality of life and functional status in systemic sclerosis compared to other rheumatic diseases. J Rheumatol 2006; 33: 1117–22.
  • 50
    Malcarne VL, Hansdottir I, McKinney A, Upchurch R, Greenbergs HL, Henstorf GH, et al. Medical signs and symptoms associated with disability, pain, and psychosocial adjustment in systemic sclerosis. J Rheumatol 2007; 34: 359–67.
  • 51
    Edwards RR, Goble L, Kwan A, Kudel I, McGuire L, Heinberg L, et al. Catastrophizing, pain, and social adjustment in scleroderma: relationships with educational level. Clin J Pain 2006; 22: 639–46.
  • 52
    Merkel PA, Clements PJ, Reveille JD, Suarez-Almazor ME, Valentini G, Furst DE, et al. Current status of outcome measure development for clinical trials in systemic sclerosis: report from OMERACT 6. J Rheumatol 2003; 30: 1630–47.
  • 53
    Poncelet AN, Connolly MK. Peripheral neuropathy in scleroderma. Muscle Nerve 2003; 28: 330–5.
    Direct Link:
  • 54
    Keefe FJ, Somers TJ, Martire LM. Psychologic interventions and lifestyle modifications for arthritis pain management. Rheum Dis Clin North Am 2008; 34: 351–68.
  • 55
    Weisshaar E, Kucenic MJ, Fleischer AB Jr. Pruritus: a review. Acta Derm Venereol Suppl 2003; 213: 5–32.
  • 56
    Mayes MD. The scleroderma book: a guide for patients and families. 2nd ed. Oxford (UK): Oxford University Press; 2005.
  • 57
    Steen VD. Clinical manifestations of systemic sclerosis. Semin Cutan Med Surg 1998; 17: 48–54.
  • 58
    Connolly MK. Scleroderma. Dermatol Ther 2001; 14: 81–94.
    Direct Link:
  • 59
    Razykov I, Thombs BD, Hudson M, Bassel M, Baron M, and the Canadian Scleroderma Research Group. Prevalence and clinical correlates of pruritus in patients with systemic sclerosis. Arthritis Rheum 2009; 61: 1765–70.
    Direct Link:
  • 60
    Desai NS, Poindexter GB, Monthrope YM, Bendeck SE, Swerlick RA, Chen SC. A pilot quality-of-life instrument for pruritus. J Am Acad Dermatol 2008; 59: 234–44.
  • 61
    Pruzinsky T. Social and psychological effects of major craniofacial deformity. Cleft Palate Craniofac J 1992; 29: 578–84.
  • 62
    Newell R, Marks I. Phobic nature of social difficulty in facially disfigured people. Br J Psychiatry 2000; 176: 177–81.
  • 63
    Rumsey N, Harcourt D. Body image and disfigurement: issues and interventions. Body Image 2004; 1: 83–97.
  • 64
    Heinberg LJ, Kudel I, White B, Kwan A, Medley K, Wigley F, et al. Assessing body image in patients with systemic sclerosis (scleroderma): validation of the Adapted Satisfaction with Appearance Scale. Body Image 2007; 4: 79–86.
  • 65
    Malcarne VL, Hansdottir I, Greenbergs HL, Clements PJ, Weisman MH. Appearance self-esteem in systemic sclerosis. Cognitive Ther Res 1999; 23: 197–208.
  • 66
    Heatherton TF, Polivy J. Development and validation of a scale for measuring state self-esteem. J Pers Soc Psychol 1991; 60: 895–910.
  • 67
    Benrud-Larson LM, Heinberg LJ, Boling C, Reed J, White B, Wigley FM, et al. Body image dissatisfaction among women with scleroderma: extent and relationship to psychosocial function. Health Psychol 2003; 22: 130–9.
  • 68
    Thompson JK. The (mis)measurement of body image: ten strategies to improve assessment for applied and research purposes. Body Image 2004; 1: 7–14.
  • 69
    Rosen JC, Srebnik D, Saltzberg E, Wendt S. Development of a body image avoidance questionnaire. Psychol Assess 1991; 3: 32–7.
  • 70
    Kapp-Simon KA, Simon DJ, Kristovich S. Self-perception, social skills, adjustment, and inhibition in young adolescents with craniofacial anomalies. Cleft Palate Craniofac J 1992; 29: 352–6.
  • 71
    Robinson E, Rumsey N, Partridge J. An evaluation of the impact of social interaction skills training for facially disfigured people. Br J Plast Surg 1996; 49: 281–9.
  • 72
    Bancroft J. Human sexuality and its problems. 3rd ed. Edinburgh (UK): Churchill Livingstone; 2009.
  • 73
    Schover LR, Jensen SR. Sexuality and chronic illness: a comprehensive approach. New York: Guilford; 1988.
  • 74
    Saad SC, Pietrzykowski JE, Lewis SS, Stepien AM, Latham VA, Messick S, et al. Vaginal lubrication in women with scleroderma and Sjögren's syndrome. Sex Disabil 1999; 17: 103–13.
  • 75
    Saad SC, Behrend AE. Scleroderma and sexuality. J Sex Res 1996; 33: 15–20.
  • 76
    Schouffoer AA, van der Marel J, ter Kuile MM, Weijenborg PT, Voskuyl A, Vliet Vlieland CW, et al. Impaired sexual function in women with systemic sclerosis: a cross-sectional study. Arthritis Rheum 2009; 61: 1601–8.
    Direct Link:
  • 77
    Knafo R, Thombs BD, Jewett L, Hudson M, Wigley F, Haythornthwaite JA. (Not) talking about sex: a systematic comparison of sexual impairment in women with systemic sclerosis and other chronic disease samples. Rheumatology (Oxford) 2009; 48: 1300–3.
  • 78
    Bhadauria S, Moser DK, Clements PJ, Singh RR, Lachenbruch PA, Pitkin RM, et al. Genital tract abnormalities and female sexual function impairment in systemic sclerosis. Am J Obstet Gynecol 1995; 172: 580–7.
  • 79
    Hong P, Pope JE, Ouimet JM, Rullan E, Seibold JR. Erectile dysfunction associated with scleroderma: a case-control study of men with scleroderma and rheumatoid arthritis. J Rheumatol 2004; 31: 508–13.
  • 80
    Rosen R, Brown C, Heiman J, Leiblum S, Meston C, Shabsigh R, et al. The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther 2000; 26: 191–208.
  • 81
    Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J, Mishra A. The International Index of Erectile Function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology 1997; 49: 822–30.
  • 82
    Hunzelmann N, Genth E, Krieg T, Lehmacher W, Melchers I, Meurer M, et al. The Registry of the German Network for Systemic Scleroderma: frequency of disease subsets and patterns of organ involvement. Rheumatology (Oxford) 2008; 47: 1185–92.
  • 83
    Mozzetta A, Antinone V, Alfani S, Neri P, Foglio Bonda PG, Pasquini P, et al. Mental health in patients with systemic sclerosis: a controlled investigation. J Eur Acad Dermatol Venereol 2008; 22: 336–40.
    Direct Link:
  • 84
    Legendre C, Allanore Y, Ferrand I, Kahan A. Evaluation of depression and anxiety in patients with systemic sclerosis. Joint Bone Spine 2005; 72: 408–11.
  • 85
    Angelopoulos NV, Drosos AA, Moutsopoulos HM. Psychiatric symptoms associated with scleroderma. Psychother Psychosom 2001; 70: 145–50.
  • 86
    Hudson M, Thombs B, Baron M, and the Canadian Scleroderma Research Group. Time to diagnosis in systemic sclerosis: is sex a factor? Arthritis Rheum 2009; 61: 274–8.
    Direct Link:
  • 87
    Poole JL, Willer K, Mendelson C. Occupation of motherhood: challenges for mothers with scleroderma. Am J Occup Ther 2009; 63: 214–9.
  • 88
    Wallston KA, Malcarne VL, Flores L, Hansdottir I, Smith CA, Stein MJ, et al. Does God determine your health? The God locus of control scale. Cognitive Ther Res 1999; 23: 131–42.
  • 89
    Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J, Coyne JC. Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull 2008; 134: 1–30.
  • 90
    Kowal-Bielecka O, Landewe R, Avouac J, Chwiesko S, Miniati I, Czirjak L, et al. EULAR recommendations for the treatment of systemic sclerosis: a report from the EULAR scleroderma trials and research group (EUSTAR). Ann Rheum Dis 2009; 68: 620–8.
  • 91
    Rubenzik TT, Derk CT. Unmet patient needs in systemic sclerosis. J Clin Rheumatol 2009; 15: 106–10.
  • 92
    Teunissen HA, van Lankveld WG, Vonk MC, van den Hoogen FH. Systemic sclerosis: impact on physical and psychological functioning, and the need for treatment. Ned Tijdschr Reumatol 2005; 4: 8–12. In Dutch.
  • 93
    Buenaver LF, McGuire L, Haythornthwaite JA. Cognitive-behavioral self-help for chronic pain. J Clin Psychol 2006; 62: 1289–96.
    Direct Link:
  • 94
    Samuelson UK, Ahlmen EM. Development and evaluation of a patient education program for persons with systemic sclerosis (scleroderma). Arthritis Care Res 2000; 13: 141–8.
    Direct Link:
  • 95
    Brown SJ, Somerset ME, McCabe CS, McHugh NJ. The impact of group education on participants' management of their disease in lupus and scleroderma. Musculoskeletal Care 2004; 2: 207–17.
    Direct Link:
  • 96
    Poole JL, Mendelson CF, Skipper B. The effectiveness of a scleroderma self management program delivered via booklet and DVD [abstract]. Arthritis Rheum 2009; 60 Suppl: S695.
  • 97
    Lorig KR, Mazonson PD, Holman HR. Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis Rheum 1993; 36: 439–46.
    Direct Link:
  • 98
    Nielson WR. Multidisciplinary interventions to improve well-being in scleroderma. Proceedings of the Annual Scientific Meeting of the American College of Rheumatology; 2009 Oct 18–21; Philadelphia, Pennsylvania.
  • 99
    Bower P, Gilbody S. Stepped care in psychological therapies: access, effectiveness and efficiency. Narrative literature review. Br J Psychiatry 2005; 186: 11–7.
  • 100
    Andersson G, Carlbring P, Berger T, Almlov J, Cuijpers P. What makes Internet therapy work? Cogn Behav Ther 2009. E-pub ahead of print.
  • 101
    Andersson G. Using the Internet to provide cognitive behaviour therapy. Behav Res Ther 2009; 47: 175–80.
  • 102
    Fox MP. A systematic review of the literature reporting on studies that examined the impact of interactive, computer-based patient education programs. Patient Educ Couns 2009; 77: 6–13.
  • 103
    Lorig KR, Ritter P, Stewart AL, Sobel DS, Brown BW Jr, Bandura A, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care 2001; 39: 1217–23.
  • 104
    Dantzer R. Cytokine-induced sickness behavior: mechanisms and implications. Ann N Y Acad Sci 2001; 933: 222–34.
    Direct Link:
  • 105
    Dantzer R. Cytokines and sickness behavior. In: KronfolZ, editor. Cytokines and mental health. Boston (MA): Kluwer Academic; 2003. p. 129–46.
  • 106
    Straub RH, Cutolo M. Does stress influence the course of rheumatic diseases? Clin Exp Rheumatol 2006; 24: 225–8.
  • 107
    Motivala SJ, Khanna D, FitzGerald J, Irwin MR. Stress activation of cellular markers of inflammation in rheumatoid arthritis: protective effects of tumor necrosis factor α antagonists. Arthritis Rheum 2008; 58: 376–83.
    Direct Link:
  • 108
    Capuron L, Ravaud A. Prediction of the depressive effects of interferon α therapy by the patient's initial affective state [letter]. N Engl J Med 1999; 340: 1370.
  • 109
    Capuron L, Dantzer R. Cytokines and depression: the need for a new paradigm. Brain Behav Immun 2003; 17: S119–24.
  • 110
    Miller GE, Rohleder N, Stetler C, Kirschbaum C. Clinical depression and regulation of the inflammatory response during acute stress. Psychosom Med 2005; 67: 679–87.
  • 111
    Motivala SJ, Sarfatti A, Olmos L, Irwin MR. Inflammatory markers and sleep disturbance in major depression. Psychosom Med 2005; 67: 187–94.
  • 112
    Zautra AJ, Yocum DC, Villanueva I, Smith B, Davis MC, Attrep J, et al. Immune activation and depression in women with rheumatoid arthritis. J Rheumatol 2004; 31: 457–63.
  • 113
    Canadian Institutes of Health Research. Knowledge translation strategy 2004–2009: innovation in action. Ottawa (Ontario): CIHR; 2004.
  • 114
    Macaulay AC, Nutting PA. Moving the frontiers forward: incorporating community-based participatory research into practice-based research networks. Ann Fam Med 2006; 4: 4–7.
  • 115
    Mendelson C, Poole JL. Become your own advocate: advice from women living with scleroderma. Disabil Rehabil 2007; 29: 1492–501.
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