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

• Published in: Seminars in arthritis and rheumatism 2016-08, Vol.46 (1), p.115-123
• Main Authors: Frantz, C, Avouac, J, Distler, O, Amrouche, F, Godard, D, Kennedy, AT, Connolly, K, Varga, J, Matucci-Cerinic, M, Allanore, Y
• Format: Article
• Language: English
• Subjects: Adult; Aged; Cross-Sectional Studies; Disability Evaluation; Female; Health Status; Health Surveys; Humans; Illness perception; Male; Middle Aged; Quality of Life; Rheumatology; Scleroderma, Systemic - diagnosis; Scleroderma, Systemic - psychology; Severity of Illness Index; Systemic sclerosis
• ISSN: 0049-0172; 1532-866X
• DOI: 10.1016/j.semarthrit.2016.02.005

Abstract Objectives The purpose of this study was to assess health-related quality of life (HRQoL) and disease perception in a large, international group of patients with systemic sclerosis (SSc). Methods We placed a standardized questionnaire on a website for patient access. Socio-demographic information, disease characteristics and self-assessment questionnaires — the Short Form 36 (SF-36) and the Revised Illness Perception Questionnaire (IPQ-R) — were collected. Results 1902 patients from 60 countries were included. HRQoL appeared to be impaired in SSc, particularly for physical health (PCS, mean±SD 43.4±23.4). SSc patients also had strongly perceptions about the chronic nature and negative consequence of the disease, and experienced negative emotions due to SSc. Patients with diffuse cutaneous SSc had a poorer HRQoL than those with limited cutaneous SSc, for both physical (PCS, mean±SD 46.6±23.7 vs. 39.8±22.3; p