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 ( = 0.39;  < .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.