The quality of life in epidermolysis bullosa (EB-QoL) questionnaire: Translation, cultural adaptation, and validation into the Farsi language

BACKGROUND: Defining the quality of life in the patients with epidermolysis bullosa (EB) is important in patient care and management. 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: This study aimed to evaluate the psychometric properties of the Farsi version of the EB-QoL questionnaire among a group of Iranian patients with EB. METHODS: The Farsi version of the EB-QoL questionnaire was finalized after translation and back-translation. From the 100 patients with EB invited to participate in the study, 83 completed the questionnaire (response rate: 83%). Subsequently, the content validity and construct validity of the questionnaire were assessed. The reliability of the questionnaire was assessed with Cronbach's alpha. Moreover, the correlation between EB-QoL scores and EB severity scores (based on the Birmingham Epidermolysis bullosa severity score scale) was evaluated. RESULTS: A total of 83 patients (40 male and 43 female) with a median age of 15 years (interquartile range, 9–24 years) and an age range between 3 and 43 years were enrolled in this study. Mean ± standard deviation scores from the EB-QoL questionnaire were 43.7 ± 9.9. The translated EB-QoL questionnaire 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 < .001). 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 patients with EB.