학술논문
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
Document Type
article
Author
S. Ingen-Housz-Oro; V. Schmidt; M. M. Ameri; R. Abe; A. Brassard; A. Mostaghimi; A. S. Paller; A. Romano; B. Didona; B. H. Kaffenberger; B. Ben Said; B. Y. H. Thong; B. Ramsay; E. Brezinova; B. Milpied; C. G. Mortz; C. Y. Chu; C. Sotozono; J. Gueudry; D. G. Fortune; S. M. Dridi; D. Tartar; G. Do-Pham; E. Gabison; E. J. Phillips; F. Lewis; C. Salavastru; B. Horvath; J. Dart; J. Setterfield; J. Newman; J. T. Schulz; A. Delcampe; K. Brockow; L. Seminario-Vidal; L. Jörg; M. P. Watson; M. Gonçalo; M. Lucas; M. Torres; M. H. Noe; N. Hama; N. H. Shear; P. O’Reilly; P. Wolkenstein; P. Romanelli; R. P. Dodiuk-Gad; R. G. Micheletti; G. S. Tiplica; R. Sheridan; S. Rauz; S. Ahmad; S. L. Chua; T. H. Flynn; W. Pichler; S. T. Le; E. Maverakis; S. Walsh; L. E. French; M. C. Brüggen
Source
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-10 (2023)
Subject
Language
English
ISSN
1750-1172
Abstract
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