Medical Sociology, Institute of Epidemiology and Preventive Medicine, University of Regensburg, Regensburg, Germany.
Department of Clinical Social Medicine, Occupational and Environmental Dermatology, University Hospital, Ruprecht Karls University Heidelberg, Heidelberg, Germany.
Contact Dermatitis. 2019 Jan;80(1):45-53. doi: 10.1111/cod.13113. Epub 2018 Sep 24.
The CARPE registry was set up in 2009 to prospectively investigate the management of patients with chronic hand eczema (CHE).
To report comprehensive follow-up data from the CARPE registry.
We investigated sociodemographic and clinical characteristics, provision of medical care, physician-assessed outcomes, and patient-reported outcomes (PROs). Data were collected between 2009 and 2016, with up to 5 years of follow-up, and are reported descriptively.
Overall, 1281 patients were included in the registry (53.7% female). Mean age was 47.0 years. Of the patients, 793 and 231 completed the 2-year follow-up and 5-year follow-up, respectively. At baseline, 5.4% had changed or given up their job because of CHE, the average duration of CHE was 6.1 years, and, in 22.4%, the CHE was severe according to physician global assessment. Systemic treatment (alitretinoin, acitretin, and methotrexate) was prescribed at least once to 39.0% of the patients during the course of the follow-up. Disease severity, quality of life and treatment satisfaction improved over time, and the proportion of patients receiving systemic treatments decreased.
Under continued dermatological care, substantial improvements in disease severity and PROs over time was achieved during the course of the CARPE registry, even in patients with long-standing and severe hand eczema.
CARPE 注册研究于 2009 年成立，旨在前瞻性研究慢性手部湿疹（CHE）患者的管理。
报告 CARPE 注册研究的综合随访数据。
我们调查了患者的社会人口学和临床特征、医疗服务提供、医生评估结果和患者报告的结局（PRO）。数据收集于 2009 年至 2016 年，随访时间长达 5 年，报告为描述性。
该注册研究共纳入 1281 例患者（53.7%为女性）。平均年龄为 47.0 岁。793 例和 231 例患者分别完成了 2 年和 5 年随访。基线时，5.4%的患者因 CHE 改变或放弃工作，CHE 的平均病程为 6.1 年，22.4%的患者根据医生整体评估为严重 CHE。在随访过程中，至少有 39.0%的患者接受了全身性治疗（阿利维 A、阿维 A 和甲氨蝶呤）。随着时间的推移，疾病严重程度、生活质量和治疗满意度均得到改善，接受系统性治疗的患者比例降低。
在持续的皮肤科护理下，CARPE 注册研究期间，即使是病程较长和病情严重的患者，疾病严重程度和 PRO 也得到了显著改善。
