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.
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.
Authors: David H Keast; C Keith Bowering; A Wayne Evans; Gerald L Mackean; Catherine Burrows; Lincoln D'Souza Journal: Wound Repair Regen Date: 2004 May-Jun Impact factor: 3.617
Authors: R Gary Sibbald; Laurie Goodman; Kevin Y Woo; Diane L Krasner; Hiske Smart; Gulnaz Tariq; Elizabeth A Ayello; Robert E Burrell; David H Keast; Dieter Mayer; Linda Norton; Richard Sal Salcido Journal: Adv Skin Wound Care Date: 2011-09 Impact factor: 2.347
Authors: Jasper Swierstra; Stephanie Debets; Corné de Vogel; Nicole Lemmens-den Toom; Nelianne Verkaik; Nadjia Ramdani-Bouguessa; Marcel F Jonkman; Jan Maarten van Dijl; Ahmed Fahal; Alex van Belkum; Willem van Wamel Journal: Infect Immun Date: 2014-11-17 Impact factor: 3.441
Authors: Christina Danial; Rasidat Adeduntan; Emily S Gorell; Anne W Lucky; Amy S Paller; Anna Bruckner; Elena Pope; Kimberly D Morel; Moise L Levy; Shufeng Li; Elaine S Gilmore; Alfred T Lane Journal: Pediatr Dermatol Date: 2014-09-18 Impact factor: 1.588
Authors: Rosemary Joan Gowran; Avril Kennan; Siobhán Marshall; Irene Mulcahy; Sile Ní Mhaille; Sarah Beasley; Mark Devlin Journal: Patient Date: 2015-02 Impact factor: 3.883
Authors: Christina Danial; Rasidat Adeduntan; Emily S Gorell; Anne W Lucky; Amy S Paller; Anna L Bruckner; Elena Pope; Kimberly D Morel; Moise L Levy; Shufeng Li; Elaine S Gilmore; Alfred T Lane Journal: Pediatr Dermatol Date: 2014-12-29 Impact factor: 1.588