Ingen-Housz-Oro, S; Schmidt, V; Ameri, M M; Abe, R; Brassard, A; Mostaghimi, A; Paller, A S; Romano, A; Didona, B; Kaffenberger, B H; Ben Said, B; Thong, B Y H; Ramsay, B; Brezinova, E; Milpied, B; Mortz, C G; Chu, C Y; Sotozono, C; Gueudry, J; Fortune, D G; ... (2023). Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus. Orphanet journal of rare diseases, 18(1), p. 33. BioMed Central 10.1186/s13023-023-02631-7
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BACKGROUND
Long-term sequelae are frequent and often disabling after epidermal necrolysis (Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN)). However, consensus on the modalities of management of these sequelae is lacking.
OBJECTIVES
We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.
METHODS
Participants were sent a survey via the online tool "Survey Monkey" consisting of 54 statements organized into 8 topics: general recommendations, professionals involved, skin, oral mucosa and teeth, eyes, genital area, mental health, and allergy workup. Participants evaluated the level of appropriateness of each statement on a scale of 1 (extremely inappropriate) to 9 (extremely appropriate). Results were analyzed according to the RAND/UCLA Appropriateness Method.
RESULTS
Fifty-two healthcare professionals participated. After the first round, a consensus was obtained for 100% of 54 initially proposed statements (disagreement index < 1). Among them, 50 statements were agreed upon as 'appropriate'; four statements were considered 'uncertain', and ultimately finally discarded.
CONCLUSIONS
Our DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.
Item Type: |
Journal Article (Original Article) |
|---|---|
Division/Institute: |
04 Faculty of Medicine > Department of Gastro-intestinal, Liver and Lung Disorders (DMLL) > Clinic of Pneumology |
UniBE Contributor: |
Jörg, Lukas |
Subjects: |
600 Technology > 610 Medicine & health |
ISSN: |
1750-1172 |
Publisher: |
BioMed Central |
Language: |
English |
Submitter: |
Pubmed Import |
Date Deposited: |
28 Feb 2023 15:44 |
Last Modified: |
05 Mar 2023 02:18 |
Publisher DOI: |
10.1186/s13023-023-02631-7 |
PubMed ID: |
36814255 |
Uncontrolled Keywords: |
Consensus Delphi Epidermal necrolysis Quality of life Sequelae Stevens-Johnson syndrome Toxic epidermal necrolysis |
BORIS DOI: |
10.48350/179172 |
URI: |
https://boris.unibe.ch/id/eprint/179172 |
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