Data

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

The University of Western Australia
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. ; Brüggen, M. C.
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ctx_ver=Z39.88-2004&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Adc&rfr_id=info%3Asid%2FANDS&rft_id=info:doi10.6084/m9.figshare.c.6584014&rft.title=Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus&rft.identifier=10.6084/m9.figshare.c.6584014&rft.publisher=Figshare&rft.description=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 &rft.creator=Ingen-Housz-Oro, S. &rft.creator=Schmidt, V. &rft.creator=Ameri, M. M. &rft.creator=Abe, R. &rft.creator=Brassard, A. &rft.creator=Mostaghimi, A. &rft.creator=Paller, A. S. &rft.creator=Romano, A. &rft.creator=Didona, B. &rft.creator=Kaffenberger, B. H. &rft.creator=Ben Said, B. &rft.creator=Thong, B. Y. H. &rft.creator=Ramsay, B. &rft.creator=Brezinova, E. &rft.creator=Milpied, B. &rft.creator=Mortz, C. G. &rft.creator=Chu, C. Y. &rft.creator=Sotozono, C. &rft.creator=Gueudry, J. &rft.creator=Fortune, D. G. &rft.creator=Dridi, S. M. &rft.creator=Tartar, D. &rft.creator=Do-Pham, G. &rft.creator=Gabison, E. &rft.creator=Phillips, E. J. &rft.creator=Lewis, F. &rft.creator=Salavastru, C. &rft.creator=Horvath, B. &rft.creator=Dart, J. &rft.creator=Setterfield, J. &rft.creator=Newman, J. &rft.creator=Schulz, J. T. &rft.creator=Delcampe, A. &rft.creator=Brockow, K. &rft.creator=Seminario-Vidal, L. &rft.creator=Jörg, L. &rft.creator=Watson, M. P. &rft.creator=Gonçalo, M. &rft.creator=Lucas, M. &rft.creator=Torres, M. &rft.creator=Noe, M. H. &rft.creator=Hama, N. &rft.creator=Shear, N. H. &rft.creator=O’Reilly, P. &rft.creator=Wolkenstein, P. &rft.creator=Romanelli, P. &rft.creator=Dodiuk-Gad, R. P. &rft.creator=Micheletti, R. G. &rft.creator=Tiplica, G. S. &rft.creator=Sheridan, R. &rft.creator=Rauz, S. &rft.creator=Ahmad, S. &rft.creator=Chua, S. L. &rft.creator=Flynn, T. H. &rft.creator=Pichler, W. &rft.creator=Le, S. T. &rft.creator=Maverakis, E. &rft.creator=Walsh, S. &rft.creator=French, L. E. &rft.creator=Brüggen, M. C. &rft.date=2024&rft.relation=http://research-repository.uwa.edu.au/en/publications/c5c84ead-9502-423d-8806-8c38923668f8&rft.type=dataset&rft.language=English Access the data
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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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External Organisations
Hôpitaux Universitaires Henri-Mondor; University of Zurich; Niigata University; University of California Davis; Brigham and Women's Hospital; Northwestern University; Oasi Maria SS; Tan Tock Seng Hospital; University Hospital Limerick; Odense University Hospital; National Taiwan University; Kyoto Prefectural University of Medicine; University of Limerick; Fondation Adolphe de Rothschild; Murdoch University; Vanderbilt University; St. Thomas' Hospital; University College London; King's College Hospital NHS Foundation Trust; Massachusetts General Hospital; Technical University of Munich; University of South Florida; University of Bern; Moorfields Eye Hospital; Centro Hospitalar de Coimbra; Sir Charles Gairdner Hospital; Instituto de Investigación Biomédica de Málaga; University of Toronto; University of Miami; Technion-Israel Institute of Technology; University of Pennsylvania; Shriners Hospitals for Children - Boston; University of Birmingham; Bon Secours Hospital Cork; ADR-AC (Switzerland)
Associated Persons
E. J. Phillips (Contributor); J. Dart (Contributor); J. Newman (Contributor); M. P. Watson (Contributor); M. Torres (Contributor); S. L. Chua (Contributor); L. E. French (Contributor)S. Ingen-Housz-Oro (Contributor); V. Schmidt (Contributor); M. M. Ameri (Contributor); R. Abe (Contributor); A. Brassard (Contributor); A. Mostaghimi (Contributor); A. S. Paller (Contributor); A. Romano (Contributor); B. Didona (Contributor); B. H. Kaffenberger (Contributor); B. Ben Said (Contributor); B. Y. H. Thong (Contributor); B. Ramsay (Contributor); E. Brezinova (Contributor); B. Milpied (Contributor); C. G. Mortz (Contributor); C. Y. Chu (Contributor); C. Sotozono (Contributor); J. Gueudry (Contributor); D. G. Fortune (Contributor); S. M. Dridi (Contributor); D. Tartar (Contributor); G. Do-Pham (Contributor); E. Gabison (Contributor); F. Lewis (Contributor); C. Salavastru (Contributor); B. Horvath (Contributor); J. Setterfield (Contributor); J. T. Schulz (Contributor); A. Delcampe (Contributor); K. Brockow (Contributor); L. Seminario-Vidal (Contributor); L. Jörg (Contributor); M. Gonçalo (Contributor); M. H. Noe (Contributor); N. Hama (Contributor); N. H. Shear (Contributor); P. O’Reilly (Contributor); P. Wolkenstein (Contributor); P. Romanelli (Contributor); R. P. Dodiuk-Gad (Contributor); R. G. Micheletti (Contributor); G. S. Tiplica (Contributor); R. Sheridan (Contributor); S. Rauz (Contributor); S. Ahmad (Contributor); T. H. Flynn (Contributor); W. Pichler (Contributor); S. T. Le (Contributor); E. Maverakis (Contributor); S. Walsh (Contributor); M. C. Brüggen (Contributor)

Issued: 2024-08-13

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