ArticleClinical, cosmetic and investigational dermatology2025
Assessing Quality of Life in Patients with Epidermolysis Bullosa in the Saudi Population: Validation of the QOLEB Questionnaire.
Article in Clinical, cosmetic and investigational dermatology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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8 authors.
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Abstract
Background: Epidermolysis bullosa (EB) is a rare condition where skin easily blisters. Using an Arabic-translated Quality of Life in Epidermolysis bullosa (QOLEB) questionnaire, we evaluated quality of life across persons with EB in Kingdom of Saudi Arabia. Methods: Respondents were selected through nonprobability convenience sampling. Data were collected using a pre-validated questionnaire. We statistically compared response data across the four EB phenotypes using the Kruskal-Wallis test. Validity was assessed through confirmatory factor analysis and Cronbach's alpha was used to evaluate reliability with results 0.88. Results: The study included 91 participants with Epidermolysis Bullosa (EB), comprising 60.4% of them were males. Adults and adolescents constituted 61.5% of the study sample. Children with EB faced more bathing challenges, with 64.3% always needing assistance compared to 31.4% of adults/adolescents. Writing adaptations varied significantly ( Conclusion: Our findings underscore the profound physical, psychological, and social burdens associated with this rare condition, emphasizing the critical need for multidisciplinary care approaches. Addressing gaps in public awareness, improving access to specialized care, and providing psychosocial support for patients and their families are essential steps toward enhancing quality of life.
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