Impaired quality of life in systemic sclerosis and patient perception of the disease: A large international survey

Seminars in Arthritis and Rheumatism

Volumn 46, Issue 1, 2016, Pages 115-123

  Frantz, Camelia ^a   Avouac, Jérôme ^a   Distler, Oliver ^b,c   Amrouche, Fazia ^a   Godard, Dominique ^d   Kennedy, Ann Tyrrell ^e   Connolly, Kerry ^f   Varga, John ^f,g   Matucci Cerinic, Marco ^h,i   Allanore, Yannick ^a,c  

^a Institut Cochin   (France)

^b UNIVERSITY HOSPITAL ZURICH   (Switzerland)

^c European Scleroderma Trials And Research (EUSTAR) Board   (France)

^d Association des Sclérodermie de France   (France)

^e Federation of the European Scleroderma Associations (FESCA) aisbl   (Belgium)

^f Services of the Scleroderma Foundation   (United States)

^g NORTHWESTERN UNIVERSITY   (United States)

^h UNIVERSITY OF FLORENCE   (Italy)

ⁱ World Scleroderma Foundation   (Switzerland)

Author keywords

Illness perception; Quality of life; Systemic sclerosis

Indexed keywords

ACCESS TO INFORMATION; ADULT; ARTICLE; CONTROLLED STUDY; COPING BEHAVIOR; DISEASE DURATION; DISEASE SEVERITY; EMOTIONALITY; HUMAN; MAJOR CLINICAL STUDY; PATIENT ATTITUDE; PRIORITY JOURNAL; QUALITY OF LIFE; QUALITY OF LIFE ASSESSMENT; QUESTIONNAIRE; RAYNAUD PHENOMENON; REVISED ILLNESS PERCEPTION QUESTIONNAIRE; SELF EVALUATION; SHORT FORM 36; SYSTEMIC SCLEROSIS; AGED; CLINICAL TRIAL; CROSS-SECTIONAL STUDY; DISABILITY; FEMALE; HEALTH STATUS; HEALTH SURVEY; MALE; MIDDLE AGED; MULTICENTER STUDY; PSYCHOLOGY; SCLERODERMA, SYSTEMIC; SEVERITY OF ILLNESS INDEX;

ADULT; AGED; CROSS-SECTIONAL STUDIES; DISABILITY EVALUATION; FEMALE; HEALTH STATUS; HEALTH SURVEYS; HUMANS; MALE; MIDDLE AGED; QUALITY OF LIFE; SCLERODERMA, SYSTEMIC; SEVERITY OF ILLNESS INDEX;

EID: 84964570098     PISSN: 00490172     EISSN: 1532866X     Source Type: Journal    
DOI: 10.1016/j.semarthrit.2016.02.005     Document Type: Article

References (45)

1. [1] Gabrielli, A., Avvedimento, E.V., Krieg, T., Scleroderma. N Engl J Med 360 (2009), 1989–2003.
2. [2] Van den Hoogen, F., Khanna, D., Fransen, J., Johnson, S.R., Baron, M., Tyndall, A., et al. 2013 Classification criteria for systemic sclerosis: an American College of Rheumatology/European League against Rheumatism collaborative initiative. Arthritis Rheum 65 (2013), 2737–2747.
3. [3] Elhai, M., Meune, C., Avouac, J., Kahan, A., Allanore, Y., Trends in mortality in patients with systemic sclerosis over 40 years: a systematic review and meta-analysis of cohort studies. Rheumatology (Oxford) 51 (2012), 1017–1026.
4. [4] Rubio-Rivas, M., Royo, C., Simeón, C.P., Corbella, X., Fonollosa, V., Mortality and survival in systemic sclerosis: systematic review and meta-analysis. Semin Arthritis Rheum 44 (2014), 208–219.
5. [5] Hudson, M., Thombs, B.D., Steele, R., Panopalis, P., Newton, E., Baron, M., et al. Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions. J Rheumatol 36 (2009), 768–772.
6. [6] Hudson, M., Steele, R., Lu, Y., Thombs, B.D., Panopalis, P., Baron, M., et al. Clinical correlates of self-reported physical health status in systemic sclerosis. J Rheumatol 36 (2009), 1226–1229.
7. [7] Steen, V.D., Medsger, T.A., The value of the Health Assessment Questionnaire and special patient-generated scales to demonstrate change in systemic sclerosis patients over time. Arthritis Rheum 40 (1997), 1984–1991.
8. [8] Guillevin, L., Hunsche, E., Denton, C.P., Krieg, T., Schwierin, B., Rosenberg, D., et al. Functional impairment of systemic scleroderma patients with digital ulcerations: results from the DUO Registry. Clin Exp Rheumatol 31:2 Suppl 76 (2013), S71–S80.
9. [9] Omair, M.A., Lee, P., Effect of gastrointestinal manifestations on quality of life in 87 consecutive patients with systemic sclerosis. J Rheumatol 39 (2012), 992–996.
10. [10] Franck-Larsson, K., Graf, W., Rönnblom, A., Lower gastrointestinal symptoms and quality of life in patients with systemic sclerosis: a population-based study. Eur J Gastroenterol Hepatol 21 (2009), 176–182.
11. [11] Georges, C., Chassany, O., Toledano, C., Mouthon, L., Tiev, K., Meyer, O., et al. Impact of pain in health related quality of life of patients with systemic sclerosis. Rheumatology 45 (2006), 1298–1302.
12. [12] Baron, M., Sutton, E., Hudson, M., Thombs, B., Markland, J., Pope, J., et al. The relationship of dyspnoea to function and quality of life in systemic sclerosis. Ann Rheum Dis 67 (2008), 644–650.
13. [13] Singh, M.K., Clements, P.J., Furst, D.E., Maranian, P., Khanna, D., Work productivity in scleroderma: analysis from the University of California, Los Angeles scleroderma quality of life study. Arthritis Care Res 64 (2012), 176–183.
14. [14] López-Bastida, J., Linertová, R., Oliva-Moreno, J., Posada-de-la-Paz, M., Serrano-Aguilar, P., Social economic costs and health-related quality of life in patients with systemic sclerosis in Spain. Arthritis Care Res 66 (2014), 473–480.
15. [15] Schouffoer, A.A., Schoones, J.W., Terwee, C.B., Vliet Vlieland, T.P.M., Work status and its determinants among patients with systemic sclerosis: a systematic review. Rheumatol Oxf Engl 51 (2012), 1304–1314.
16. [16] Sharif, R., Mayes, M.D., Nicassio, P.M., Gonzalez, E.B., Draeger, H., McNearney, T.A., et al. Determinants of work disability in patients with systemic sclerosis: a longitudinal study of the GENISOS cohort. Semin Arthritis Rheum 41 (2011), 38–47.
17. [17] Meier, F.M.P., Frommer, K.W., Dinser, R., Walker, U.A., Czirjak, L., Denton, C.P., et al. Update on the profile of the EUSTAR cohort: an analysis of the EULAR Scleroderma Trials and Research group database. Ann Rheum Dis 71 (2012), 1355–1360.
18. [18] Hudson, M., Thombs, B.D., Steele, R., Panopalis, P., Newton, E., Baron, M., et al. Health-related quality of life in systemic sclerosis: a systematic review. Arthritis Care Res 61 (2009), 1112–1120.
19. [19] Von Elm, E., Altman, D.G., Egger, M., Pocock, S.J., Gøtzsche, P.C., Vandenbroucke, J.P., et al. The Strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. Lancet Lond Engl 370 (2007), 1453–1457.
20. [20] Ware, J.E., Kosinski, M., Dewey, J.E., Gandek, B., SF-36 health survey: manual and interpretation guide, 2000, Quality Metric Inc., Lincoln, RI.
21. [21] Ware JE, Kosinski M, Turner-Bowker DM, Gandek B. User's manual for the SF-12v2 Health Survey. Linc RI Qual Inc [Internet], Available from: 〈http://opencourses.emu.edu.tr/pluginfile.php/8472/mod_resource/content/1/SF-12v2%20Manual.pdf〉; 2002 [cited August 23, 2015].
22. [22] Ware, J.E., Sherbourne, C.D., The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30 (1992), 473–483.
23. [23] Moss-Morris, R., Weinman, J., Petrie, K., Horne, R., Cameron, L., Buick, D., The revised illness perception questionnaire (IPQ-R). Psychol Health. 17 (2002), 1–16.
24. [24] Miksch, A., Hermann, K., Rölz, A., Joos, S., Szecsenyi, J., Ose, D., et al. Additional impact of concomitant hypertension and osteoarthritis on quality of life among patients with type 2 diabetes in primary care in Germany—a cross-sectional survey. Health Qual Life Outcomes, 7, 2009, 19.
25. [25] French, D.P., Wade, A.N., Farmer, A.J., Predicting self-care behaviours of patients with type 2 diabetes: the importance of beliefs about behaviour, not just beliefs about illness. J Psychosom Res 74 (2013 Apr), 327–333.
26. [26] Thong, M.S.Y., van Dijk, S., Noordzij, M., Boeschoten, E.W., Krediet, R.T., Dekker, F.W., et al. Symptom clusters in incident dialysis patients: associations with clinical variables and quality of life. Nephrol Dial Transplant 24 (2009), 225–230.
27. [27] Chilcot, J., Wellsted, D., Farrington, K., Illness representations are associated with fluid nonadherence among hemodialysis patients. J Psychosom Res 68 (2010), 203–212.
28. [28] Schowalter, M., Gelbrich, G., Störk, S., Langguth, J.-P., Morbach, C., Ertl, G., et al. Generic and disease-specific health-related quality of life in patients with chronic systolic heart failure: impact of depression. Clin Res Cardiol 102:4 (2013), 269–278.
29. [29] Bijsterbosch, J., Scharloo, M., Visser, A.W., Watt, I., Meulenbelt, I., Huizinga, T.W.J., et al. Illness perceptions in patients with osteoarthritis: change over time and association with disability. Arthritis Care Res 61 (2009), 1054–1061.
30. [30] Elhai, M., Avouac, J., Walker, U.A., Matucci-Cerinic, M., Riemekasten, G., Airò, P., et al. A gender gap in primary and secondary heart dysfunctions in systemic sclerosis: a EUSTAR prospective study. Ann Rheum Dis 75 (2016), 163–169.
31. [31] Willems, L.M., Kwakkenbos, L., Leite, C.C., Thombs, B.D., van den Hoogen, F.H.J., Maia, A.C., et al. Frequency and impact of disease symptoms experienced by patients with systemic sclerosis from five European countries. Clin Exp Rheumatol 32:6 Suppl 86 (2014), S88–S93.
32. [32] Hughes, M., Snapir, A., Wilkinson, J., Snapir, D., Wigley, F.M., Herrick, A.L., Prediction and impact of attacks of Raynaud's phenomenon, as judged by patient perception. Rheumatol Oxf Engl 54 (2015), 1443–1447.
33. [33] Chan, P.T., Mok, C.C., Chan, K.L., Ho, L.Y., Functioning and health-related quality of life in Chinese patients with systemic sclerosis: a case-control study. Clin Rheumatol 33 (2014), 659–666.
34. [34] Khanna, D., Yan, X., Tashkin, D.P., Furst, D.E., Elashoff, R., Roth, M.D., et al. Impact of oral cyclophosphamide on health-related quality of life in patients with active scleroderma lung disease: results from the scleroderma lung study. Arthritis Rheum 56 (2007), 1676–1684.
35. [35] Meyer, O., De Chaisemartin, L., Nicaise-Roland, P., Cabane, J., Tubach, F., Dieude, P., et al. Anti-RNA polymerase III antibody prevalence and associated clinical manifestations in a large series of French patients with systemic sclerosis: a cross-sectional study. J Rheumatol 37 (2010), 125–130.
36. [36] Sobanski, V., Dauchet, L., Lefèvre, G., Lambert, M., Morell-Dubois, S., Sy, T., et al. Prevalence of anti-RNA polymerase III antibodies in systemic sclerosis: new data from a French cohort and a systematic review and meta-analysis. Arthritis Rheumatol 66 (2014), 407–417.
37. [37] Dr, A.G., Curtis, R., Coughlan, R., Gsel, A., The impact of illness representations and disease activity on adjustment in women with rheumatoid arthritis: a longitudinal study. Psychol Health 20:5 (2005), 597–613.
38. [38] Fortune, D.G., Richards, H.L., Griffiths, C.E.M., Main, C.J., Psychological stress, distress and disability in patients with psoriasis: consensus and variation in the contribution of illness perceptions, coping and alexithymia. Br J Clin Psychol 41 (2002), 157–174.
39. [39] Arat, S., Verschueren, P., De Langhe, E., Smith, V., Vanthuyne, M., Diya, L., et al. The association of illness perceptions with physical and mental health in systemic sclerosis patients: an exploratory study. Musculoskeletal Care 10 (2012), 18–28.
40. [40] Richards, H.L., Herrick, A.L., Griffin, K., Gwilliam, P.D.H., Loukes, J., Fortune, D.G., Systemic sclerosis: patients’ perceptions of their condition. Arthritis Rheum 49 (2003), 689–696.
41. [41] Cinar, F.I., Unver, V., Yilmaz, S., Cinar, M., Yilmaz, F., Simsek, I., et al. Living with scleroderma: patients’ perspectives, a phenomenological study. Rheumatol Int 32 (2012), 3573–3579.
42. [42] Cinar, F.I., Unver, V., Cinar, M., Yilmaz, S., Simsek, I., Tosun, N., et al. Coping strategies for activities of daily living in women whose hands affected by systemic sclerosis. J Clin Nurs 23 (2014), 1630–1638.
43. [43] Gyger, G., Hudson, M., Lo, E., Steele, R. Canadian Scleroderma Research Group (CSRG), Baron, M., Does cigarette smoking mitigate the severity of skin disease in systemic sclerosis?. Rheumatol Int 33:4 (2013), 943–948.
44. [44] Chaudhary, P., Chen, X., Assassi, S., Gorlova, O., Draeger, H., Harper, B.E., et al. Cigarette smoking is not a risk factor for systemic sclerosis. Arthritis Rheum 63 (2011), 3098–3102.
45. [45] Taylor, G., McNeill, A., Girling, A., Farley, A., Lindson-Hawley, N., Aveyard, P., Change in mental health after smoking cessation: systematic review and meta-analysis. Br Med J, 348, 2014, g1151.