Tanemura Chika, Nunotani Maya, Kawabata Kyoko, Morooka Yuki, Yamagami Jun, Kakuta Risa, Saito Yasuko, Kurihara Yuichi, Takahashi Hayato, Ishii Norito, Koga Hiroshi, Nakama Takekuni, Hayashi Daisuke, Hiroyasu Sho, Tateishi Chiharu, Tsuruta Daisuke, Murrell Dedee F, Hashimoto Takashi
School of Nursing, Mukogawa Women's University, Hyogo, Japan.
Department of Dermatology, Tokyo Women's Medical University Hospital, Tokyo, Japan.
J Dermatol. 2025 May;52(5):812-830. doi: 10.1111/1346-8138.17707. Epub 2025 Mar 20.
Patients with autoimmune bullous disease have their quality of life (QOL) affected by both the disease and its treatment burden. While QOL assessment is clinically important, it is often hindered by limited time in clinical practice, highlighting the need for accurate and efficient QOL evaluation tools. However, no validated QOL questionnaires are currently available in Japan. This study evaluated the validity and reliability of the Japanese versions of the Autoimmune Bullous Disease Quality of Life (ABQOL) and Treatment of Autoimmune Bullous Disease Quality of Life (TABQOL) questionnaires, as well as their practical application in clinical settings. The original questionnaires were forward and back-translated into Japanese by certified translators according to established guidelines, then their validity and reliability were evaluated using data from 147 patients with autoimmune bullous diseases. Validity was evaluated via confirmatory and exploratory factor analyses, cross-cultural validation, hypothesis testing, and convergent validity. Reliability was evaluated via test-retest and internal consistency. Although confirmatory factor analysis showed a weak fit and factor structures slightly differed from the original versions, internal consistency was cross-culturally valid. Also, the Japanese version cohort showed lower mean scores and better QOL outcomes compared with other language versions for similar cohorts. Hypothesis testing revealed a significant positive correlation between ABQOL scores and subjective disease severity; TABQOL scores were significantly correlated with steroid dosage. The mucosal subscale of the ABQOL showed a significant difference based on mucosal lesion status. Bland-Altman plots confirmed approximate agreement between the two sets of measurements: Cronbach's alpha coefficients were 0.872 for ABQOL and 0.903 for TABQOL, verifying reliability. Finally, an expert panel reviewed and agreed on the target population, timing, methods for using the scales, and considerations for scale evaluation. The Japanese versions of the ABQOL and TABQOL are expected to be implemented in clinical practice as reliable and validated tools in Japan.
自身免疫性大疱性疾病患者的生活质量(QOL)会受到疾病本身及其治疗负担的影响。虽然QOL评估在临床上很重要,但在临床实践中往往因时间有限而受到阻碍,这凸显了对准确且高效的QOL评估工具的需求。然而,目前日本尚无经过验证的QOL问卷。本研究评估了日本版自身免疫性大疱性疾病生活质量(ABQOL)问卷和自身免疫性大疱性疾病治疗生活质量(TABQOL)问卷的有效性和可靠性,以及它们在临床环境中的实际应用。原始问卷由专业翻译人员按照既定指南进行正向和反向翻译成日语,然后使用来自147例自身免疫性大疱性疾病患者的数据对其有效性和可靠性进行评估。通过验证性和探索性因素分析、跨文化验证、假设检验和收敛效度来评估有效性。通过重测法和内部一致性来评估可靠性。尽管验证性因素分析显示拟合度较弱且因素结构与原始版本略有不同,但内部一致性具有跨文化效度。此外,与其他语言版本的类似队列相比,日本版队列的平均得分较低且QOL结果更好。假设检验显示ABQOL得分与主观疾病严重程度之间存在显著正相关;TABQOL得分与类固醇剂量显著相关。ABQOL的黏膜子量表根据黏膜病变状态显示出显著差异。Bland-Altman图证实了两组测量之间的近似一致性:ABQOL的Cronbach's alpha系数为0.872,TABQOL为0.903,验证了可靠性。最后,一个专家小组对目标人群、时间、量表使用方法以及量表评估的注意事项进行了审查并达成一致。预计日本版的ABQOL和TABQOL将作为可靠且经过验证的工具在日本的临床实践中得到应用。