Abstract
Background: Epidermolysis bullosa (EB) is a group of genodermatoses characterized by fragile skin that may progress to erosions, blisters, and open nonhealing wounds. Understanding home skincare practices and topical products use among patients with EB is necessary to optimize management outcomes and quality of life. Purpose: The purpose of this study was to assess home bathing, skincare routines, and topical product used in patients with EB. Methods: Cross-sectional, observational study data were collected from patient-directed questionnaires in the Saudi EB registry. Data collection and statistical analyses were conducted using Microsoft Excel and SPSS-V.25. Results: Thirty-seven patients (62% males; mean age 14; [2 months-36] years) were enrolled. EB subtypes included EB simplex (n = 13), junctional EB (n = 6), and dystrophic EB (n = 13); five patients had unknown type. Twenty-one patients (57%) dislike multilayer wound dressings and/or find that they exacerbate the blistering during summer and in hot climates. Almost one-quarter of participants reported lancing a few of the intact blisters, and 5.4% did not lance any. Bath additives ranged from barely effective to potentially cytotoxic solutions of vinegar and sodium hypochlorite solution. Around 1/3rd of participants reported the use of topical antibiotics with no alternation or rotation on dirty wounds, and 8.1% of our cohort reported the use of antibiotics on intact skin. Conclusion: Education is needed for EB patients and their families on lancing of blisters and topical antibiotic use, especially in light of increasing antibiotic resistance. Dressing modification for EB patients living in the Gulf region countries, particularly during hot and humid months, may be helpful.