Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
Autor(a) principal: | |
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Data de Publicação: | 2023 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) |
Texto Completo: | https://hdl.handle.net/10316/111619 https://doi.org/10.1186/s13023-023-02631-7 |
Resumo: | 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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Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensusEpidermal necrolysisStevens-Johnson syndromeToxic epidermal necrolysisSequelaeQuality of lifeDelphiConsensusHumansConsensusSkinDisease ProgressionStevens-Johnson SyndromeBackground 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.BMJ2023-02-22info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articlehttps://hdl.handle.net/10316/111619https://hdl.handle.net/10316/111619https://doi.org/10.1186/s13023-023-02631-7eng1750-1172Ingen-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. C. Marco deTorres, 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, N.French, L. E.Brüggen, M. C.info:eu-repo/semantics/openAccessreponame:Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiainstacron:RCAAP2024-01-18T10:49:45Zoai:estudogeral.uc.pt:10316/111619Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireinfo@rcaap.ptopendoar:https://opendoar.ac.uk/repository/71602025-05-29T06:03:57.467584Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiafalse |
dc.title.none.fl_str_mv |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
title |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
spellingShingle |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus Ingen-Housz-Oro, S. Epidermal necrolysis Stevens-Johnson syndrome Toxic epidermal necrolysis Sequelae Quality of life Delphi Consensus Humans Consensus Skin Disease Progression Stevens-Johnson Syndrome |
title_short |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
title_full |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
title_fullStr |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
title_full_unstemmed |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
title_sort |
Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
author |
Ingen-Housz-Oro, S. |
author_facet |
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. C. Marco de 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, N. French, L. E. Brüggen, M. C. |
author_role |
author |
author2 |
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. C. Marco de 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, N. French, L. E. Brüggen, M. C. |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.author.fl_str_mv |
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. C. Marco de 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, N. French, L. E. Brüggen, M. C. |
dc.subject.por.fl_str_mv |
Epidermal necrolysis Stevens-Johnson syndrome Toxic epidermal necrolysis Sequelae Quality of life Delphi Consensus Humans Consensus Skin Disease Progression Stevens-Johnson Syndrome |
topic |
Epidermal necrolysis Stevens-Johnson syndrome Toxic epidermal necrolysis Sequelae Quality of life Delphi Consensus Humans Consensus Skin Disease Progression Stevens-Johnson Syndrome |
description |
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. |
publishDate |
2023 |
dc.date.none.fl_str_mv |
2023-02-22 |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://hdl.handle.net/10316/111619 https://hdl.handle.net/10316/111619 https://doi.org/10.1186/s13023-023-02631-7 |
url |
https://hdl.handle.net/10316/111619 https://doi.org/10.1186/s13023-023-02631-7 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
1750-1172 |
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info:eu-repo/semantics/openAccess |
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openAccess |
dc.publisher.none.fl_str_mv |
BMJ |
publisher.none.fl_str_mv |
BMJ |
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RCAAP |
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Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) |
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Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) |
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Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia |
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info@rcaap.pt |
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