Both Hilde, Essink-Bot Marie-Louise, Busschbach Jan, Nijsten Tamar
Department of Dermatology, Erasmus MC, Rotterdam, The Netherlands.
J Invest Dermatol. 2007 Dec;127(12):2726-39. doi: 10.1038/sj.jid.5701142. Epub 2007 Nov 8.
The measurement of health-related quality of life (HRQOL) is increasingly important in patients with skin diseases. Despite the availability of a variety of instruments and new psychometric techniques, there is no consensus as to which HRQOL instruments are to be preferred in dermatology. The objective of this review is to evaluate the generic HRQOL measures (i.e., health profiles) that have been used in dermatology (Short-Form-36 (SF-36) and -12, NHP, SIP, World Health Organization Quality of Life (WHOQOL)-100 and -BREF) and all dermatology-specific HRQOL measures (Dermatology Life Questionnaire Index, Skindex-29, -16, and -17, Dermatology Quality of Life Scales, and Dermatology-Specific Quality of Life). Criteria for evaluation were adapted from existing guidelines and included conceptual and measurement model, reliability, validity, responsiveness, item functioning, meaning of scores, administrative burden, respondent burden, the availability of alternative forms, and of cultural and language adaptations. Furthermore, an overview of skin diseases in which the included HRQOL tools have been used is presented. Although the selection of the appropriate HRQOL instrument remains a trade-off between various psychometric properties and research objectives, for now, we recommend the combination of SF-36 and Skindex-29 as the instruments of choice in dermatology. Promising new instruments for future research are the WHOQOL and the Skindex-17.
健康相关生活质量(HRQOL)的测量在皮肤病患者中日益重要。尽管有多种工具和新的心理测量技术可供使用,但对于皮肤病领域应首选哪些HRQOL工具尚无共识。本综述的目的是评估已在皮肤病学中使用的通用HRQOL测量方法(即健康概况)(简短健康调查简表-36(SF-36)和-12、诺丁汉健康量表(NHP)、疾病影响量表(SIP)、世界卫生组织生活质量量表(WHOQOL)-100和- BREF)以及所有皮肤病特异性HRQOL测量方法(皮肤病生活问卷指数、皮肤病生活质量指数(Skindex)-29、-16和-17、皮肤病生活质量量表以及皮肤病特异性生活质量量表)。评估标准改编自现有指南,包括概念和测量模型、信度、效度、反应度、条目功能、分数的意义、管理负担、应答者负担、替代形式的可用性以及文化和语言适应性。此外,还介绍了使用所纳入的HRQOL工具的皮肤病概述。尽管选择合适的HRQOL工具仍然需要在各种心理测量特性和研究目标之间进行权衡,但目前我们建议将SF-36和Skindex-29组合作为皮肤病学中的首选工具。未来研究中具有潜力的新工具是WHOQOL和Skindex-17。