遗传性大疱性表皮松解症病人生活质量问卷的汉化及信效度检验

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Sinicization of the Quality of Life Evaluation in Epidermolysis Bullosa and its reliability and validity test

GAO Hailong1， CHEN Jie2*

1. School of Nursing， Fudan University， Shanghai 201100 China； 2. Pediatric Hospital Affiliated to Fudan University

*Corresponding Author  CHEN Jie， E⁃mail： jiefd2005@aliyun.com

Abstract  Objective：Translation and validation of the Chinese Version of the Quality of Life in Epidermolysis Bullosa （QOLEB） Questionnaire.Methods：Based on Brislin's translation-back translation model，the English version of QOLEB in patients with EB was translated，culturally adjusted and pre⁃investigated，and 150 patients with EB were investigated for reliability and validity.Results：The Chinese version of QOLEB included 17 items with two dimensions， emotional experience and physiological function，and the cumulative variance contribution rate was 64.700%.The Cronbach's α coefficient was 0.948，and the retest reliability was 0.928.Conclusion：The Chinese version of QOLEB has good reliability and validity，and can be used to evaluate quality of life in patients with EB.

Keywords    inherited epidermolysis bullosa， EB； quality of life； reliability； validity； Delphi process

摘要  目的：汉化遗传性大疱性表皮松解症病人生活质量问卷（Quality of Life Evaluation in Epidermolysis Bullosa，QOLEB）并进行信效度检验。（剩余10450字）