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

Pediatr Dermatol. 2020 Mar;37(2):326-332. doi: 10.1111/pde.14102. Epub 2020 Jan 15.


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.

Keywords: epidermolysis bullosa; genodermatoses; quality of life; skin barrier; therapy-topical.

Publication types

  • Multicenter Study
  • Observational Study

MeSH terms

  • Administration, Topical
  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Cosmetics / administration & dosage
  • Cross-Sectional Studies
  • Databases, Factual
  • Detergents / administration & dosage*
  • Epidermolysis Bullosa / therapy*
  • Female
  • Humans
  • Infant
  • Male
  • Middle Aged
  • Self Care
  • Skin Care*
  • Young Adult


  • Cosmetics
  • Detergents