Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
S. Oro, Veronika Schmidt, Milad Ameri, Riichiro Abe, Alain Brassard, Arash Mostaghimi, Amy S. Paller, Antonino Romano, Biagio Didona, Benjamin H. Kaffenberger, B. Ben Saïd, Bernard Yu‐Hor Thong, B. Ramsay, Eva Březinová, B. Milpied, Charlotte G. Mørtz, Chia‐Yu Chu, Chie Sotozono, J. Gueudry, Dónal G. Fortune, Mourad Dridi, Danielle Tartar, G. Do–Pham, Éric Gabison, Elizabeth J. Phillips, Fiona Lewis, Carmen Sălăvăstru, Barbara Horváth, John Dart, Jane Setterfield, Jason Newman, John Schulz, A. Delcampe, Knut Brockow, Lucia Seminario‐Vidal, Lukas Jörg, Maggie Watson, Margarida Gonçalo, Michaela Lucas, Miguel Ángel Fuentes Torres, Megan H. Noe, Natsumi Hama, Neil H. Shear, Pauline O’Reilly, P. Wolkenstein, Paolo Romanelli, Roni P. Dodiuk‐Gad, Robert G. Micheletti, George‐Sorin Ţiplica, Robert L. Sheridan, Saaeha Rauz, Sajjad Ahmad, Ser‐Ling Chua, T. H. Flynn, Werner J. Pichler, Stephanie T. Le, Emanual Maverakis, Sarah Walsh, Lars E. French, Marie‐Charlotte Brüggen
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.