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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.
SUBMITTER: Ingen-Housz-Oro S
PROVIDER: S-EPMC9945700 | biostudies-literature | 2023 Feb
REPOSITORIES: biostudies-literature
Ingen-Housz-Oro S S Schmidt V V Ameri M M MM Abe R R Brassard A A Mostaghimi A A Paller A S AS Romano A A Didona B B Kaffenberger B H BH Ben Said B B Thong B Y H BYH Ramsay B B Brezinova E E Milpied B B Mortz C G CG Chu C Y CY Sotozono C C Gueudry J J Fortune D G DG Dridi S M SM Tartar D D Do-Pham G G Gabison E E Phillips E J EJ Lewis F F Salavastru C C Horvath B B Dart J J Setterfield J J Newman J J Schulz J T JT Delcampe A A Brockow K K Seminario-Vidal L L Jörg L L Watson M P MP Gonçalo M M Lucas M M Torres M M Noe M H MH Hama N N Shear N H NH O'Reilly P P Wolkenstein P P Romanelli P P Dodiuk-Gad R P RP Micheletti R G RG Tiplica G S GS Sheridan R R Rauz S S Ahmad S S Chua S L SL Flynn T H TH Pichler W W Le S T ST Maverakis E E Walsh S S French L E LE Brüggen M C MC
Orphanet journal of rare diseases 20230222 1
<h4>Background</h4>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.<h4>Objectives</h4>We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.<h4>Methods</h4>Participants were sent a survey via ...[more]