Augustin M, Gajur A I, Reich C, Rustenbach S J, Schaefer I
Competenzzentrum Versorgungsforschung in der Dermatologie, FG Gesundheitsökonomie und Lebensqualitätsforschung, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Deutschland.
Dermatology. 2008;217(2):101-6. doi: 10.1159/000128992. Epub 2008 May 2.
In addition to clinical efficacy, patient-defined benefit assessment has become an important outcome parameter. Thus far, no such instrument has been developed for vitiligo.
Development and validation of a patient-defined benefit questionnaire in the therapy of vitiligo.
Open questioning of 50 vitiligo patients generated 110 benefit items, which were converted into a 26-item questionnaire by a panel of dermatologists, psychologists and patients. This was used to record patient-defined needs prior to therapy and to evaluate patient benefit attained after therapy. A 'patient benefit index' (PBI) was formed on the basis of both. Validation was based on data of n = 1,023 vitiligo patients.
The questionnaires were feasible in clinical practice, Cronbach's alpha (patient need questionnaire) was 0.94. The PBI showed convergent and discriminant validity with respect to quality of life and patient satisfaction.
The PBI for vitiligo is a valid instrument, which is highly accepted in practice for recording patient-reported benefit.
除临床疗效外，患者定义的获益评估已成为一项重要的结果参数。迄今为止，尚未针对白癜风开发出此类工具。
开发并验证一种用于白癜风治疗的患者定义的获益问卷。
对50名白癜风患者进行开放式询问，得到110项获益条目，由一组皮肤科医生、心理学家和患者将其转化为一份包含26个条目的问卷。该问卷用于记录治疗前患者定义的需求，并评估治疗后患者获得的获益。在此基础上形成了一个“患者获益指数”（PBI）。验证基于1023名白癜风患者的数据。
这些问卷在临床实践中可行，Cronbach's α（患者需求问卷）为0.94。PBI在生活质量和患者满意度方面显示出收敛效度和区分效度。
白癜风的PBI是一种有效的工具，在实践中被高度认可用于记录患者报告的获益。
