Impaired quality of life in patients with systemic sclerosis compared to the general population and chronic dermatoses

BMC Research Notes

Elisabeth Aberer¹  Nora Wutte¹  Alexander Avian³  Clemens Painsi²  Agnes Bretterklieber¹ 

[1] Department of Dermatology and Venereology, Medical University of Graz, Auenbrugger Platz 8, A-8036 Graz, Austria;Present address: Department of Dermatology, General Hospital, Klagenfurt, Austria;Institute for Medical Informatics, Statistics and Documentation, Medical University of Graz, Graz, Austria

关键词: SF-36;    Chronic skin disease;    Lupus erythematosus;    Quality of life;    Systemic sclerosis;   

Others  :  1129906
DOI  :  10.1186/1756-0500-7-594

 received in 2014-01-27, accepted in 2014-07-30,  发布年份 2014

【 摘 要 】

Background

Systemic sclerosis (SSc) is a rare and potentially life threatening autoimmune disorder. The burden of disease compared to other dermatoses is unknown. The purpose of this study was to assess both the quality of life in patients with SSc and the variables that are associated with poor quality of life. Forty-one patients with systemic sclerosis (29 limited, 2 diffuse, 10 undifferentiated forms) were assessed with respect to their health status and compared to published data for the normal population, SSc patients from other studies, and patients with chronic skin diseases.

Results

For the most part, our SSc patients had better outcomes in all 8 dimensions of the SF-36 than SSc patients from other studies, and poorer scores than the healthy population and those with occupational contact dermatitis, ichthyosis, non-melanoma skin cancer, contact dermatitis, atopic eczema, chronic nail disease, vitiligo, health care workers with work-related disease, and those with other chronic skin diseases, but significantly better scores for mental health than those with nail disease, vitiligo, and health-care workers. Patients with atopic dermatitis, psoriasis and pemphigus had significantly poorer mean scores in social function and mental health than SSc patients. Patients with pemphigus were also significantly impaired in their physical and emotional roles. Patients with systemic lupus erythematosus (SLE) had the significantly poorest mean scores for QoL in all 8 domains except bodily pain and emotional role.

Conclusion

Besides SLE, SSc is one of the most severe chronic dermatologic diseases in terms of reduced QoL. Since SSc cannot be cured, treatment strategies should include therapeutic interventions such as psychotherapy, social support, physiotherapy, and spiritual care. Their beneficial effects could be studied in future.

【 授权许可】

   
2014 Bretterklieber et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

【 参考文献 】

• [1]Gabrielli A, Avvedimento EV, Krieg T: Scleroderma. N Engl J Med 2009, 360:1989-2003.
• [2]Preliminary criteria for the classification of systemic sclerosis (scleroderma). Subcommetee for scleroderma criteria of the American Rheumatism Association Diagnostic and Therapeutic Criteria Commettee Arthritis Rheum 1980, 23:581-590.
• [3]Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M: Quality of life in patients with systemic sclerosis compared to the general population and patients with other chronic conditions. J Rheumatol 2009, 36:768-772.
• [4]Baker EL, Coleman CI, Reinhart KM, Phung OJ, Kugelman L, Chen W, White CM, Mamolo CM, Cappelleri JC, Baker WL: Effect of Biologic Agents on Non-PASI Outcomes in Moderate-to-Severe Plaque Psoriasis: Systematic Review and Meta-Analyses. Dermatol Ther (Heidelb) 2012, 2:9.
• [5]McHorney CA, Ware JE Jr, Raczek AE: The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993, 31:247-263.
• [6]Ware JE Jr, Sherbourne CD: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992, 30:473-483.
• [7]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, 33:1117-1122.
• [8]Hudson M, Steele R, Lu Y, Thombs BD, Panopalis P, Baron M: Clinical correlates of self-reported physical health status in systemic sclerosis. J Rheumatol 2009, 36:1226-1229.
• [9]Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M: Health-related quality of life in systemic sclerosis: a systematic review. Arthritis Rheum 2009, 61:1112-1120.
• [10]Rannou F, Poiraudeau S, Berezne A, Baubet T, Le-Guern V, Cabane J, Guillevin L, Revel M, Fermanian J, Mouthon L: Assessing disability and quality of life in systemic sclerosis: construct validities of the Cochin Hand Function Scale, Health Assessment Questionnaire (HAQ), Systemic Sclerosis HAQ, and Medical Outcomes Study 36-Item Short Form Health Survey. Arthritis Rheum 2007, 57:94-102.
• [11]Ostojic P, Damjanov N: The scleroderma Assessment Questionnaire (SAQ). A new self-assessment questionnaire for evaluation of disease status in patients with systemic sclerosis. Z Rheumatol 2006, 65:168-175.
• [12]Iudici M, Cuomo G, Vettori S, Avellino M, Valentini G: Quality of life as measured by the short-form 36 (SF-36) questionnaire in patients with early systemic sclerosis and undifferentiated connective tissue disease. Health Qual Life Outcomes 2013, 11:23. BioMed Central Full Text
• [13]Mestre-Stanislas C, Poiraudeau S, Berezne A, Rannou F, Pagnoux C, Revel M, Guillevin L, Mouthon L: Differences in patients with systemic sclerosis recruited from associations and tertiary care settings. Presse Med 2010, 39:e205-e209.
• [14]Bullinger MKI: SF-36 Fragebogen zum Gesundheitszustand. Göttingen, Bern, Toronto, Seattle: Hogrefe-Verlag GmbH & Co, Verlag für Psychologie; 1998.
• [15]Lau MY, Matheson MC, Burgess JA, Dharmage SC, Nixon R: Disease severity and quality of life in a follow-up study of patients with occupational contact dermatitis. Contact Dermatitis 2011, 65:138-145.
• [16]Ganemo A, Sjoden PO, Johansson E, Vahlquist A, Lindberg M: Health-related quality of life among patients with ichthyosis. Eur J Dermatol 2004, 14:61-66.
• [17]Rhee JS, Loberiza FR, Matthews BA, Neuburg M, Smith TL, Burzynski M: Quality of life assessment in nonmelanoma cervicofacial skin cancer. Laryngoscope 2003, 113:215-220.
• [18]Thomson KF, Wilkinson SM, Sommer S, Pollock B: Eczema: quality of life by body site and the effect of patch testing. Br J Dermatol 2002, 146:627-630.
• [19]Holm EA, Wulf HC, Stegmann H, Jemec GB: Life quality assessment among patients with atopic eczema. Br J Dermatol 2006, 154:719-725.
• [20]Tabolli S, Alessandroni L, Gaido J, Sampogna F, Di Pietro C, Abeni D: Health-related quality of life and nail disorders. Acta Derm Venereol 2007, 87:255-259.
• [21]Wang KY, Wang KH, Zhang ZP: Health-related quality of life and marital quality of vitiligo patients in China. J Eur Acad Dermatol Venereol 2011, 25:429-435.
• [22]Matterne U, Apfelbacher CJ, Soder S, Diepgen TL, Weisshaar E: Health-related quality of life in health care workers with work-related skin diseases. Contact Dermatitis 2009, 61:145-151.
• [23]Maksimovic N, Jankovic S, Marinkovic J, Sekulovic LK, Zivkovic Z, Spiric VT: Health-related quality of life in patients with atopic dermatitis. J Dermatol 2012, 39:42-47.
• [24]Sampogna F, Tabolli S, Soderfeldt B, Axtelius B, Aparo U, Abeni D: Measuring quality of life of patients with different clinical types of psoriasis using the SF-36. Br J Dermatol 2006, 154:844-849.
• [25]Tabolli S, Mozzetta A, Antinone V, Alfani S, Cianchini G, Abeni D: The health impact of pemphigus vulgaris and pemphigus foliaceus assessed using the Medical Outcomes Study 36-item short form health survey questionnaire. Br J Dermatol 2008, 158:1029-1034.
• [26]Jolly M: How does quality of life of patients with systemic lupus erythematosus compare with that of other common chronic illnesses? J Rheumatol 2005, 32:1706-1708.
• [27]De Angelis R, Salaffi F, Grassi W: Health-related quality of life in primary Raynaud phenomenon. J Clin Rheumatol 2008, 14:206-210.
• [28]Perrot S, Dieude P, Perocheau D, Allanore Y: Comparison of pain, pain burden, coping strategies, and attitudes between patients with systemic sclerosis and patients with rheumatoid arthritis: a cross-sectional study. Pain Med 2013, 14:1776-1785.
• [29]Nguyen C, Ranque B, Baubet T, Berezne A, Mestre-Stanislas C, Rannou F, Papelard A, Morell-Dubois S, Revel M, Moro MR, Guillevin L, Poiraudeau S, Mouthon L, Groupe Français de Recherche sur la Sclérodermie: Clinical, functional and health-related quality of life correlates of clinically significant symptoms of anxiety and depression in patients with systemic sclerosis: a cross-sectional survey. PLoS One 2014, 9:e90484.
• [30]Suarez-Almazor ME, Kallen MA, Roundtree AK, Mayes M: Disease and symptom burden in systemic sclerosis: a patient perspective. J Rheumatol 2007, 34:1718-1726.
• [31]Joachim G, Acorn S: Life with a rare chronic disease: the scleroderma experience. J Adv Nurs 2003, 42:598-606.
• [32]Stamm TA, Mattsson M, Mihai C, Stocker J, Binder A, Bauernfeind B, Stummvoll G, Gard G, Hesselstrand R, Sandqvist G, Draghicescu O, Gherghe AM, Voicu M, Machold KP, Distler O, Smolen JS, Boström C: Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries. Ann Rheum Dis 2011, 70:1074-1079.
• [33]Ginsburg IH: The psychosocial impact of skin disease. An overview. Dermatol Clin 1996, 14:473-484.
• [34]Duruoz MT, Poiraudeau S, Fermanian J, Menkes CJ, Amor B, Dougados M, Revel M: Development and validation of a rheumatoid hand functional disability scale that assesses functional handicap. J Rheumatol 1996, 23:1167-1172.
• [35]Kwakkenbos L, Bluyssen SJ, Vonk MC, van Helmond AF, van den Ende CH, van den Hoogen FH, van Lankveld WG: Addressing patient health care demands in systemic sclerosis: pre-post assessment of a psycho-educational group programme. Clin Exp Rheumatol 2011, 29:S60-S65.
• [36]Mozzetta A, Antinone V, Alfani S, Neri P, Foglio Bonda PG, Pasquini P, Puddu P, Picardi A: Mental health in patients with systemic sclerosis: a controlled investigation. J Eur Acad Dermatol Venereol 2008, 22:336-340.
• [37]Reynolds N, Mrug S, Hensler M, Guion K, Madan-Swain A: Spiritual Coping and Adjustment in Adolescents With Chronic Illness: A 2-Year Prospective Study. J Pediatr Psychol 2014, 39:542-551.
• [38]Bussing A, Janko A, Baumann K, Hvidt NC, Kopf A: Spiritual needs among patients with chronic pain diseases and cancer living in a secular society. Pain Med 2013, 14:1362-1373.
• [39]Koenig M, Joyal F, Fritzler MJ, Roussin A, Abrahamowicz M, Boire G, Goulet JR, Rich E, Grodzicky T, Raymond Y, Senecal JL: Autoantibodies and microvascular damage are independent predictive factors for the progression of Raynaud’s phenomenon to systemic sclerosis: a twenty-year prospective study of 586 patients, with validation of proposed criteria for early systemic sclerosis. Arthritis Rheum 2008, 58:3902-3912.
• [40]Bender R, Lange S: Adjusting for multiple testing–when and how? J Clin Epidemiol 2001, 54:343-349.