title: A consensus approach to wound care in epidermolysis bullosa.
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.
  
  
  OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Section of Dermatology, Department of Pediatrics, Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada. Elena.pope@sickkids.ca
authors.forename: Elena
authors.initials: E
authors.lastname: Pope
authors.forename: Irene
authors.initials: I
authors.lastname: Lara-Corrales
authors.forename: Jemima
authors.initials: J
authors.lastname: Mellerio
authors.forename: Anna
authors.initials: A
authors.lastname: Martinez
authors.forename: Gregory
authors.initials: G
authors.lastname: Schultz
authors.forename: Robert
authors.initials: R
authors.lastname: Burrell
authors.forename: Laurie
authors.initials: L
authors.lastname: Goodman
authors.forename: Patricia
authors.initials: P
authors.lastname: Coutts
authors.forename: John
authors.initials: J
authors.lastname: Wagner
authors.forename: Upton
authors.initials: U
authors.lastname: Allen
authors.forename: Gary
authors.initials: G
authors.lastname: Sibbald
mesh_terms: D000203:Activities of Daily Living; D001458:Bandages; D003697:Delphi Technique; D004820:Epidermolysis Bullosa / Q000150:complications* / Q000503:physiopathology / Q000628:therapy*; D006801:Humans; D007223:Infant; D007224:Infant Care; D009752:Nutritional Status; D010147:Pain Measurement; D011537:Pruritus / Q000209:etiology / Q000628:therapy; D014945:Wound Healing; D014947:Wounds and Injuries / Q000628:therapy