- 作者：Elena Pope ; Irene Lara-Corrales ; Jemima Mellerio ; Anna Martinez ; Gregory Schultz ; Robert Burrell ; Laurie Goodman ; Patricia Coutts ; John Wagner ; Upton Allen ; Gary Sibbald
- 关键词：consensus ; epidermolysis bullosa ; guidelines ; wound care
- 刊名：Journal of the American Academy of Dermatology
- 出版年：2012
- 出版时间：November, 2012
- 年：2012
- 卷：67
- 期：5
- 页码：904-917
- 全文大小：225 K
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.