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. 2012 Nov;67(5):904-17.
doi: 10.1016/j.jaad.2012.01.016. Epub 2012 Mar 2.

A consensus approach to wound care in epidermolysis bullosa

Elena Pope  1 , Irene Lara-Corrales, Jemima Mellerio, Anna Martinez, Gregory Schultz, Robert Burrell, Laurie Goodman, Patricia Coutts, John Wagner, Upton Allen, Gary Sibbald
Affiliations

A consensus approach to wound care in epidermolysis bullosa

Elena Pope et al. J Am Acad Dermatol. 2012 Nov.

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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Conflict of interest statement

Conflicts of interest: None declared.

Figures

Fig 1
Fig 1
Methods diagram.
See this image and copyright information in PMC

References

    1. Fine JD, Eady RA, Bauer EA, Bauer JW, Bruckner-Tuderman L, Heagerty A, et al. The classification of inherited epidermolysis bullosa (EB): report of the third international consensus meeting on diagnosis and classification of EB. J Am Acad Dermatol. 2008;58:931–50. - PubMed
    1. Fine JD, Mellerio JE. Extracutaneous manifestations and complications of inherited epidermolysis bullosa, part I: epithelial associated tissues. J Am Acad Dermatol. 2009;61:367–84. - PubMed
    1. Fine JD, Mellerio JE. Extracutaneous manifestations and complications of inherited epidermolysis bullosa, part II: other organs. J Am Acad Dermatol. 2009;61:387–402. - PubMed
    1. Murphy MK, Black NA, Lamping DL, McKee CM, Sanderson CF, Askham J, et al. Consensus development methods, and their use in clinical guideline development. Health Technol Assess. 1998;2:i–iv. 1–88. - PubMed
    1. Jones J, Hunter D. Consensus methods for medical and health services research. BMJ. 1995;311:376–80. - PMC - PubMed

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