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

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 DE...

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Autores principales: 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.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9945700/
https://www.ncbi.nlm.nih.gov/pubmed/36814255
http://dx.doi.org/10.1186/s13023-023-02631-7
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author 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.
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.
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.
author_sort Ingen-Housz-Oro, S.
collection PubMed
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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-023-02631-7.
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spelling pubmed-99457002023-02-23 Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus 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. Orphanet J Rare Dis Position Statement 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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-023-02631-7. BioMed Central 2023-02-22 /pmc/articles/PMC9945700/ /pubmed/36814255 http://dx.doi.org/10.1186/s13023-023-02631-7 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Position Statement
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.
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
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_short 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
topic Position Statement
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9945700/
https://www.ncbi.nlm.nih.gov/pubmed/36814255
http://dx.doi.org/10.1186/s13023-023-02631-7
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