Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
Journal
Orphanet journal of rare diseases
Journal Volume
18
Journal Issue
1
Date Issued
2023-02-22
Author(s)
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
et al.,
Abstract
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.
Subjects
Consensus
Delphi
Epidermal necrolysis
Quality of life
Sequelae
Stevens-Johnson syndrome
Toxic epidermal necrolysis
SDGs
Type
journal article