Braren-von Stülpnagel Catharina C, Augustin Matthias, Westphal Lukas, Sommer Rachel
German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
J Eur Acad Dermatol Venereol. 2023 Feb 18. doi: 10.1111/jdv.18977.
Patients with chronic skin diseases suffer from physical, psychological, emotional and social impairments. The overall burden has significant impact on patients' life, contributing to irreversible damage across many domains, known as cumulative life course impairment (CLCI). The aim of this project was to develop instruments which (a) measure persisting CLCI and (b) identify patients at risk for developing future CLCI.
We identified key topics that negatively impact life course due to skin disease patient-reported open item selection. Subsequently, we conducted focus group interviews with patients and experts to conceptualize items and response scales, resulting in two preliminary measurement tools. These tools were tested in a cognitive debriefing before finalization.
Consecutively, 162 patients participated in the open item selection and indicated the following topics were most relevant to their disease: disease symptoms, risk behaviour, comorbidities, psychological and emotional impairments, physical impairments, occupational impairments, treatment, sexuality, problems with family or friends, everyday life and positive event or decisions because of the disease. In the focus group interviews, patients reported stigmatization, support at disease onset, pre-existing diseases and age of onset as additional important topics. The cognitive debriefing resulted in minor changes to sentence structure. The final tools included: (1) DermCLCI-r, which assesses retrospective CLCI, and (2) DermCLCI-p, which assesses current CLCI and future risk. Each tool consisted of 30 items.
The newly developed measures allow for early identification of CLCI, facilitate adequate dermatological and psychosocial interventions and may contribute to the prevention of CLCI. Further validation studies will be performed.
慢性皮肤病患者会遭受身体、心理、情感和社会方面的损害。总体负担对患者的生活有重大影响，会在许多领域造成不可逆转的损害，即累积生命历程损害（CLCI）。本项目的目的是开发一些工具，（a）测量持续存在的CLCI，（b）识别有未来发生CLCI风险的患者。
我们通过患者报告的开放式项目选择，确定了对生命历程有负面影响的关键主题。随后，我们对患者和专家进行了焦点小组访谈，以构思项目和反应量表，从而形成了两个初步测量工具。在最终确定之前，对这些工具进行了认知反馈测试。
共有162名患者连续参与了开放式项目选择，并指出以下主题与他们的疾病最相关：疾病症状、风险行为、合并症、心理和情感损害、身体损害、职业损害、治疗、性、与家人或朋友的问题、日常生活以及因疾病而产生的积极事件或决定。在焦点小组访谈中，患者报告了污名化、疾病发作时的支持、既往疾病和发病年龄等其他重要主题。认知反馈导致句子结构有轻微变化。最终工具包括：（1）DermCLCI-r，用于评估回顾性CLCI；（2）DermCLCI-p，用于评估当前CLCI和未来风险。每个工具由三十个项目组成。
新开发的测量方法能够早期识别CLCI，促进适当的皮肤病学和心理社会干预，并可能有助于预防CLCI。将进行进一步的验证研究。
