Université Paris Descartes and Assistance Publique Hôpitaux de Paris, Department of Internal Medicine, Cochin Hospital, Paris, France.
Arthritis Care Res (Hoboken). 2011 Feb;63(2):277-85. doi: 10.1002/acr.20342.
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.
评估系统性硬化症（SSc；硬皮病）和指溃疡（DU）对日常生活和职业活动的影响。
我们前瞻性评估了法国 SSc 患者协会会议期间（n=86，45.5%）或住院期间（n=103，54.5%）的 189 例 SSc 患者的就业状况和残疾情况。
78 例（41.2%）患者患有弥漫性 SSc。评估时患者的平均年龄为 54±13 岁，平均病程为 9.3±8.4 年。60 例（31.7%）患者至少有一个 DU。使用健康评估问卷（平均±标准差 1.12±0.79 与 1.39±0.84；P=0.001）、科钦手功能量表（平均±标准差 20.2±18.3 与 27.8±19.1；P<0.0001）和医院焦虑量表（平均±标准差 9.9±5 与 8.5±4.2；P=0.04）评估，患有 DU 的患者的整体残疾、手部残疾和焦虑分别显著更高。大多数患者报告了与 SSc 相关的日常活动受限，通过日常活动限制量表（平均±标准差 4.4±2.9）和对家庭帮助的需求增加来评估。患者报告每月平均需要 4±13.5 小时的有偿家庭帮助与 SSc 相关，每月平均需要 1.5±10 小时与 DU 相关，且有 DU 和无 DU 的患者之间存在显著差异（P=0.004）。在 113 名在职患者中，67 名（59.3%）就业，42 名（37.2%）全职就业，36 名（31.8%）领取全额残疾抚恤金，27 名（23.9%）休病假，有无 DU 的患者之间无差异。
SSc 对日常生活活动和工作能力残疾有重大影响。对于患有 DU 的患者，对外来家庭帮助和残疾的需求增加。
