Abstract

To evaluate the impact of systemic sclerosis (SSc; scleroderma) and digital ulcers (DUs) on daily living and professional activities. We prospectively evaluated 189 SSc patients for employment status and disability during meetings of the French SSc patient association (n=86, 45.5%) or during hospitalization (n=103, 54.5%). Seventy-eight (41.2%) patients had diffuse SSc. The mean±SD age was 54±13 years, and the mean±SD disease duration was 9.3±8.4 years at the time of evaluation. Sixty (31.7%) patients had at least one DU. Assessed using the Health Assessment Questionnaire (mean±SD 1.12±0.79 versus 1.39±0.84; P=0.001), the Cochin Hand Function Scale (mean±SD 20.2±18.3 versus 27.8±19.1; P<0.0001), and the Hospital Anxiety Scale (mean±SD 9.9±5 versus 8.5±4.2; P=0.04), global disability, hand disability, and anxiety, respectively, were significantly higher in patients with DUs than in others. Most patients reported a limitation in daily activities related to SSc, as assessed by a daily activity limitation scale (mean±SD 4.4±2.9) and an increased need for help in the home. Patients reported needing mean±SD 4±13.5 hours per month of paid household help related to SSc and mean±SD 1.5±10 hours per month related to DUs, with significant differences between patients with or without DUs (P=0.004). Among the 113 patients in the workforce, 67 (59.3%) were employed, 42 (37.2%) were employed full time, 36 (31.8%) received full disability pension, and 27 (23.9%) were on sick leave, with no difference between patients with or without DUs. SSc has a significant impact on activities of daily living and work disability. The need for external home help and disability are increased for those patients with DUs.

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