1. Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
- Author
-
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, Dridi, S M, Tartar, D, Do-Pham, G, Gabison, E, Phillips, E J, Lewis, F, Salavastru, C, Horvath, B, Dart, J, Setterfield, J, Newman, J, Schulz, J T, Delcampe, A, Brockow, K, Seminario-Vidal, L, Jörg, L, Watson, M P, Gonçalo, M, Lucas, M, Torres, M, Noe, M H, Hama, N, Shear, N H, O'Reilly, P, Wolkenstein, P, Romanelli, P, Dodiuk-Gad, R P, Micheletti, R G, Tiplica, G S, Sheridan, R, Rauz, S, Ahmad, S, Chua, S L, Flynn, T H, Pichler, W, Le, S T, Maverakis, E, Walsh, S, French, L E, and Brüggen, M C
- Subjects
Quality of life ,Genetics & Heredity ,Consensus ,Other Medical and Health Sciences ,610 Medicine & health ,Toxic epidermal necrolysis ,General Medicine ,Stevens-Johnson syndrome ,Delphi ,Sequelae ,Disease Progression ,Humans ,Pharmacology (medical) ,Epidermal necrolysis ,Dental/Oral and Craniofacial Disease ,610 Medizin und Gesundheit ,Genetics (clinical) ,Skin - 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 Conclusions Our DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.
- Published
- 2023