Ezzedine Khaled, Bennani Mohammed, Shourick Jason, Taieb Charles
University Hospital Henri-Mondor, Department of Dermatology, Créteil, France.
Qualees, Paris, France.
Clin Cosmet Investig Dermatol. 2020 Aug 6;13:521-528. doi: 10.2147/CCID.S260323. eCollection 2020.
In recent years, the concept of "disease burden" has been given a central role in evaluating patient care, particularly in skin diseases. Measuring patient-reported outcomes (PRO) such as symptoms and disease burden may be useful.
To present a methodology that facilitates the development and validation of burden questionnaires for patients suffering from skin diseases.
Based on past published burden questionnaires, a methodology for designing skin disease burden questionnaires was to be developed.
Based on 16 burden questionnaires developed and published over the last 10 years, the authors propose a standardized methodology for the easy design and validation of disease burden questionnaires for patients with chronic skin diseases. The authors provide detailed guidance for the conception, development and validation of the questionnaires, including reliability, internal consistency, external validity, cognitive debriefing, testing-retesting, translation and cross-cultural adaptation, as well as for statistical analysis.
The proposed methodology enhances the design and validation of disease burden questionnaires in dermatology. Burden questionnaires may be used in clinical research as well as in daily clinical practice.
近年来，“疾病负担”的概念在评估患者护理方面，尤其是在皮肤病领域，发挥了核心作用。测量患者报告的结果（PRO），如症状和疾病负担，可能会有所帮助。
介绍一种有助于为皮肤病患者开发和验证负担问卷的方法。
基于过去发表的负担问卷，开发一种设计皮肤病负担问卷的方法。
基于过去10年开发并发表的16份负担问卷，作者提出了一种标准化方法，以便轻松设计和验证慢性皮肤病患者的疾病负担问卷。作者为问卷的构思、开发和验证提供了详细指导，包括可靠性、内部一致性、外部有效性、认知反馈、重测、翻译和跨文化适应，以及统计分析。
所提出的方法改进了皮肤病学中疾病负担问卷的设计和验证。负担问卷可用于临床研究以及日常临床实践。
