Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus.

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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