Skin cleansing and topical product use in patients with epidermolysis bullosa: Results from a multicenter database

Abstract

Background/Objectives Epidermolysis bullosa (EB) comprises a group of inherited skin blistering diseases. There is currently no cure, and management includes skin protection and prevention of infection. To date, there has been no systematic investigation of home skin care practices among EB patients on a multicenter scale. Methods This cross‐sectional, observational study included data collected from patients with EB enrolled in the Epidermolysis Bullosa Characterization and Clinical Outcomes Database (EBCCOD) who provided answers to a patient‐directed questionnaire between January 1, 2017, and December 31, 2017. Results Of 202 respondents, 130 (64.4%) had dystrophic EB, 51 (25.2%) had EB simplex, 21 (7.4%) had junctional EB, 3 (1.5%) had Kindler syndrome, and 3 (1.5%) had an unspecified subtype. Seventy‐eight patients reported cleansing in plain water only (39%). Of those who used an additive in their cleansing water, 75 (57%) added salt, 71 (54%) added bleach, 36 (27%) added vinegar, and 34 (26%) endorsed the use of an “other” additive (multiple additives possible). Reported concentrations of additives ranged widely from 0.002% sodium hypochlorite and 0.002% acetic acid solutions, which are thought to have negligible effects on microbes, to 0.09% sodium hypochlorite and 0.156% acetic acid, concentrations shown to be cytotoxic. One hundred eighty‐eight patients answered questions regarding topical product use (93%). Of those, 131 reported topical antimicrobial use (70%). Mupirocin and bacitracin were the most commonly reported topical antibiotics (59, 58 [31.4%, 30.9%], respectively). Conclusions These findings highlight the variety of skin care routines and frequent use of topical antimicrobials among EB patients and have potential implications for antibiotic resistance. The reported range of bleach and vinegar additives to cleansing water, including cytotoxic concentrations, emphasizes the need for clear and optimized skin cleansing recommendations.

Characterization of wound microbes in epidermolysis bullosa: Results from the epidermolysis bullosa clinical characterization and outcomes database

“…Therefore, these data could not be temporally correlated with wound culture results. 12 The limited number of patients who had both a history of SCC and recorded wound culture results within the registry, as well as the prolonged duration to the development of SCC, precluded inclusion of large enough numbers to reliably identify microbes that confer a significant risk for the development of SCC.…”

A systematic literature review of the disease burden in patients with recessive dystrophic epidermolysis bullosa

“…Eight publications reported on economic outcomes in patients with RDEB or their families [53,59,61,62,[76][77][78][79]. Costs of wound care (including dressing and time costs), medical costs, and hospitalization costs were reported in South Korea [59], Ireland [78], the United Kingdom (UK) [62,76], and the US [77].…”

“…The time required for wound care was considerable (Table 7) [53,59,79]. A single-center survey of patients (N = 11) in the UK reported a median time of 25.25 h per week (101 h per month) spent on wound dressings [76].…”

“…A single-center survey of patients (N = 11) in the UK reported a median time of 25.25 h per week (101 h per month) spent on wound dressings [76]. In a US and Canadian survey, the majority of patients (55/90, 61%) required the assistance of one person for dressing changes; 17% (15/90) required two assistants [79]. Only 22% (20/90) did not require assistance.…”

Acetic acid and the skin: a review of vinegar in dermatology

“…Prevention of skin infection in epidermolysis bullosa (EB) is an important consideration 20 . More than one quarter of EB patients (27%) reported bathing with additives in water, which included vinegar ranging in concentration between 0.002 and 0.156% 21 . A panel of international experts generated 17 recommendations to treat wounds in EB patients, including a recommendation for wound cleansing with application of 0.25‐1% diluted vinegar in the bath or as a compress applied for 15‐20 minutes 20,22 …”