Department of Dermatology, St George Hospital, University of New South Wales, Sydney, Australia.
JAMA Dermatol. 2013 Oct;149(10):1186-91. doi: 10.1001/jamadermatol.2013.4972.
Quality-of-life (QOL) evaluation is an increasingly important outcome measure in dermatology, with disease-specific QOL instruments being the most sensitive to changes in disease status.
To develop a QOL instrument specific to autoimmune bullous disease (AIBD).
A comprehensive item generation process was used to build a 45-item pilot Autoimmune Bullous Disease Quality of Life (ABQOL) questionnaire, distributed to 70 patients with AIBD. Experts in bullous disease refined the pilot ABQOL before factor analysis was performed to yield the final ABQOL questionnaire of 17 questions. We evaluated validity and reliability across a range of indices.
Australian dermatology outpatient clinics and private dermatology practices. PATIENTS AND EXPOSURE: Patients with a histological diagnosis of AIBD.
The development of an AIBD-specific QOL instrument.
Face and content validity were established through the comprehensive patient interview process and expert review. In terms of convergent validity, the ABQOL was found to have a moderate correlation with scores on the Dermatology Life Quality Index (R = 0.63) and the General Health subscale of the 36-Item Short Form Health Survey (R = 0.69; P = .009) and low correlation with the Pemphigus Disease Area Index (R = 0.42) and Autoimmune Bullous Disease Skin Disorder Intensity Score (R = 0.48). In terms of discriminant validity, the ABQOL was found to be more sensitive than the Dermatology Life Quality Index (P = .02). The ABQOL was also found to be a reliable instrument evaluated by internal consistency (Cronbach α coefficient, 0.84) and test-retest reliability (mean percentage variation, 0.92).
The ABQOL has been shown to be a valid and reliable instrument that may serve as an end point in clinical trials. Future work should include incorporating patient weighting on questions to further increase content validity and translation of the measure to other languages.
anzctr.org.au Identifier: ACTRN12612000750886.
生活质量（QOL）评估是皮肤科中越来越重要的结果衡量标准，疾病特异性 QOL 工具对疾病状态的变化最敏感。
开发一种专门针对自身免疫性大疱性疾病（AIBD）的 QOL 工具。
使用全面的项目生成过程构建了一个包含 45 个项目的试点自身免疫性大疱性疾病生活质量（ABQOL）问卷，分发给 70 名 AIBD 患者。大疱病专家在进行因子分析得出最终的 17 个问题的 ABQOL 问卷之前，对试点 ABQOL 进行了完善。我们通过一系列指标评估了有效性和可靠性。
澳大利亚皮肤科门诊和私人皮肤科诊所。
组织学诊断为 AIBD 的患者。
开发一种 AIBD 特异性 QOL 工具。
通过全面的患者访谈过程和专家审查确立了表面和内容效度。在收敛效度方面，ABQOL 与皮肤病生活质量指数（R = 0.63）和 36 项简短健康调查问卷的一般健康子量表（R = 0.69；P =.009）的评分呈中度相关，与天疱疮疾病面积指数（R = 0.42）和自身免疫性大疱性疾病皮肤疾病严重程度评分（R = 0.48）的相关性较低。在判别效度方面，ABQOL 比皮肤病生活质量指数（P =.02）更敏感。通过内部一致性（Cronbach α 系数为 0.84）和测试-重测可靠性（平均百分比变化为 0.92）评估，ABQOL 也是一种可靠的工具。
ABQOL 已被证明是一种有效且可靠的工具，可作为临床试验的终点。未来的工作应包括在问题上纳入患者权重，以进一步提高内容效度，并将该措施翻译成其他语言。
anzctr.org.au 标识符：ACTRN12612000750886。
