Yazdanshenas Atoosa, Naderi Ezatollah, Moravvej Hamideh, Heidari Kazem, Faghankhani Masoomeh, Vahidnezhad Hassan, Mozafari Nikoo
Department of Educational Science, Science and Research Branch, Islamic Azad University, Tehran, Iran.
Skin Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran.
Int J Womens Dermatol. 2020 Jun 3;6(4):301-305. doi: 10.1016/j.ijwd.2020.05.012. eCollection 2020 Sep.
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.
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.
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.
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).
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.
明确大疱性表皮松解症（EB）患者的生活质量对患者护理和管理至关重要。生活质量评估需要一个有效且可靠的量表。大疱性表皮松解症生活质量（EB-QoL）问卷是一份包含17个条目的英文问卷，已成为评估EB患者生活质量的有用工具。
本研究旨在评估EB-QoL问卷波斯语版本在一组伊朗EB患者中的心理测量特性。
EB-QoL问卷波斯语版本经翻译和回译后最终确定。邀请100名EB患者参与研究，其中83名完成了问卷（应答率：83%）。随后，评估问卷的内容效度和结构效度。用Cronbach's alpha评估问卷的信度。此外，评估EB-QoL评分与EB严重程度评分（基于伯明翰大疱性表皮松解症严重程度评分量表）之间的相关性。
本研究共纳入83例患者（40例男性和43例女性），中位年龄为15岁（四分位间距，9 - 24岁），年龄范围在3至43岁之间。EB-QoL问卷的平均±标准差评分为43.7±9.9。翻译后的EB-QoL问卷显示出较高的内部一致性（Cronbach alpha = 0.90）和足够的项目-总分相关性。此外，EB-QoL与EB严重程度评分之间存在显著相关性（ = 0.39； <.001）。
EB-QoL问卷波斯语版本具有可接受的效度和信度。因此，该问卷可用于未来研究，以评估伊朗EB患者的生活质量。
