A Consensus Approach to Wound Care in Epidermolysis Bullosa

Overview

Journal J Am Acad Dermatol

Specialty Dermatology

Date 2012 Mar 6

PMID 22387035

Citations 50

Authors

Elena Pope

Irene Lara-Corrales

Jemima Mellerio

Anna Martinez

Gregory Schultz

Robert Burrell

Laurie Goodman

Patricia Coutts

John Wagner

Upton Allen

Gary Sibbald

Affiliations

Soon will be listed here.

Abstract

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 proposed items. These were further refined and grouped into 5 main 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.

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