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

Detalhes bibliográficos
Autor(a) principal: Ingen-Housz-Oro, S.
Data de Publicação: 2023
Outros Autores: 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.
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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spelling 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
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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
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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
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv BMJ
publisher.none.fl_str_mv BMJ
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instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
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repository.mail.fl_str_mv info@rcaap.pt
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