Grob Jean Jacques
Department of Dermatology, Hopital Ste. Marguerite, Marseille, France.
J Invest Dermatol. 2007 Oct;127(10):2299-301. doi: 10.1038/sj.jid.5701081.
Patient-reported outcomes, especially heath-related quality of life (HRQOL) outcomes, are particularly relevant for chronic skin disorders (CSDs), because lesion scores such as PASI are less meaningful in making therapeutic decisions. Patient perception of the disease impact, such as HRQOL, should be the main outcome measure in therapeutic trials for CSDs, especially for expensive biotherapies. To be credible as reference measures, dermatology-specific instruments of HRQOL must generate similar scores in different countries and different cultures. Because none of the currently used instruments--e.g., the Dermatology Life Questionnaire Index (DLQI) and Skindex--fulfills this requirement, it is important to generate new instruments or adapt existing ones.
患者报告的结局,尤其是与健康相关的生活质量(HRQOL)结局,对于慢性皮肤病(CSD)尤为重要,因为诸如银屑病面积和严重程度指数(PASI)等皮损评分在治疗决策中的意义较小。患者对疾病影响的感知,如HRQOL,应成为CSD治疗试验的主要结局指标,尤其是对于昂贵的生物疗法。为了作为参考指标具有可信度,特定于皮肤科的HRQOL工具必须在不同国家和不同文化中产生相似的评分。由于目前使用的工具,如皮肤病生活问卷指数(DLQI)和皮肤病专用生活质量指数(Skindex),均未满足这一要求,因此开发新工具或对现有工具进行调整非常重要。