A consensus approach to wound care in epidermolysis bullosa

Elena Pope, Irene Lara-Corrales, Jemima Mellerio, Anna Martinez, Gregory Schultz, Robert Burrell, Laurie Goodman, Patricia Coutts, John Wagner, Upton Allen, Gary Sibbald

Research output: Contribution to journalArticlepeer-review

128 Scopus citations


Background: Wound care is the cornerstone of treatment for patients with epidermolysis bullosa (EB); however, there are currently no guidelines to help practitioners care for these patients. Objectives: The objective of this study was to generate a list of recommendations that will enable practitioners to better care for patients with EB. Methods: An expert panel generated a list of recommendations based on the best evidence available. The recommendations were translated into a survey, and sent to other EB experts to generate consensus using an online-based modified Delphi method. The list was refined and grouped into themes and specific recommendations. Results: There were 15 respondents (45%response rate), with significant experience in the EB field (>10 years [67%]). Respondents included physicians (67%), nurses (17%), and allied health professionals (7%). There was more than 85%agreement for all the proposeditems.Thesewere further refined andgroupedinto 5main themes (assessment and management of factors that impair healing, patient-centered concerns, local wound care, development of an individualized care plan, and organizational support) and 17 specific recommendations. Limitations: There is a paucity of scientific evidence with most recommendations based on expert opinion. Conclusions: These recommendations will provide practitioners with a framework for caring for these patients. Additional scientific research including effectiveness studies for everyday practice and expert consensus, may further refine these recommendations.

Original languageEnglish (US)
Pages (from-to)904-917
Number of pages14
JournalJournal of the American Academy of Dermatology
Issue number5
StatePublished - 2012

Bibliographical note

Publisher Copyright:
© 2012 by the American Academy of Dermatology, Inc.


  • Consensus
  • Epidermolysis bullosa
  • Guidelines
  • Wound care


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