학술논문
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
Document Type
article
Author
Ingen-Housz-Oro, S; Schmidt, V; Ameri, MM; Abe, R; Brassard, A; Mostaghimi, A; Paller, AS; Romano, A; Didona, B; Kaffenberger, BH; Ben Said, B; Thong, BYH; Ramsay, B; Brezinova, E; Milpied, B; Mortz, CG; Chu, CY; Sotozono, C; Gueudry, J; Fortune, DG; Dridi, SM; Tartar, D; Do-Pham, G; Gabison, E; Phillips, EJ; Lewis, F; Salavastru, C; Horvath, B; Dart, J; Setterfield, J; Newman, J; Schulz, JT; Delcampe, A; Brockow, K; Seminario-Vidal, L; Jörg, L; Watson, MP; Gonçalo, M; Lucas, M; Torres, M; Noe, MH; Hama, N; Shear, NH; O’Reilly, P; Wolkenstein, P; Romanelli, P; Dodiuk-Gad, RP; Micheletti, RG; Tiplica, GS; Sheridan, R; Rauz, S; Ahmad, S; Chua, SL; Flynn, TH; Pichler, W; Le, ST; Maverakis, E; Walsh, S; French, LE; Brüggen, MC
Source
Orphanet Journal of Rare Diseases. 18(1)
Subject
Language
Abstract
BackgroundLong-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.ObjectivesWe conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.MethodsParticipants 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.ResultsFifty-two healthcare professionals participated. After the first round, a consensus was obtained for 100% of 54 initially proposed statements (disagreement index