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Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus

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Ingen-Housz-Oro, S. | Schmidt, V. | Ameri, M. | Abe, R. | Brassard, A. | Mostaghimi, A. | Paller, A. | Romano, A. | Didona, B. | Kaffenberger, B. | Ben Said, B. | Thong, B. | Ramsay, B. | Brezinova, E. | Milpied, B. | Mortz, C. | Chu, C. | Sotozono, C. | Gueudry, J. | Fortune, D. | Dridi, S. | Tartar, D. | Do-Pham, G. | Gabison, E. | Phillips, E. | Lewis, F. | Salavastru, C. | Horvath, B. | Dart, J. | Setterfield, J. | Newman, J. | Schulz, J. | Delcampe, A. | Brockow, K. | Seminario-Vidal, L. | Jörg, L. | Watson, M. | Gonçalo, M. | Lucas, M. | Torres, M. | Noe, M. | Hama, N. | Shear, N. | O’reilly, P. | Wolkenstein, P. | Romanelli, P. | Dodiuk-Gad, R. | Micheletti, R. | Tiplica, G. | Sheridan, R. | Rauz, S. | Ahmad, S. | Chua, S. | Flynn, T. | Pichler, W. | Le, S. | Maverakis, E. | Walsh, S. | French, L. | Brüggen, M.

Edité par CCSD ; BioMed Central -

International audience. 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.

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