The Quality of Life in Epidermolysis Bullosa (EB-QOL) Questionnaire: Translation, Cultural Adaptation, and Validation into Farsi Language

Abstract Background defining the quality of life in the patients suffering from epidermolysis bullosa (EB) is important in patient care and management. Also, evaluation of quality of life requires a valid and reliable scale. The quality of life in Epidermolysis bullosa (EB-QOL) questionnaire, which is an English 17-item questionnaire, has emerged as a useful tool for assessing the quality of life in the patients with EB Objective To evaluate the psychometric properties of the Farsi version of this questionnaire among a group of Iranian Epidermolysis bullosa patients. Methods The Farsi version of the EB-QOL questionnaire was finalized after translation and back-translation. From 100 EB patients invited to participate in the study, 83 individuals completed the questionnaire (response rate 83%). Then, the content validity and the construct validity of the questionnaire were assessed. The reliability of the questionnaire was assessed by Cronbach's α. Moreover, the correlation between EB-QOL scores and EB severity scores (based on The Birmingham Epidermolysis bullosa severity score scale) was evaluated. Results Eighty-three subjects (40 males and 43 females) with the median age of 15 years old (IQR: 9-24) ranged between 3 and 43 years old were enrolled in this study. Mean±standard deviation (SD) scores on the EB-QOL were 43.7±9.9 in the subjects. The translated EB-QOL showed a high internal consistency (Cronbach alpha = 0.90) and adequate item-total correlation. Also, there was a significant correlation between EB-QOL and EB severity scores (r= 0.39, p Conclusion The Farsi version of EB-QOL questionnaire has acceptable validity and reliability. Thus, the questionnaire can be used for future studies to assess the quality of life among Iranian Epidermolysis bullosa patients.