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

J 2023

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

INGEN-HOUSZ-ORO, S., V. SCHMIDT, M. M. AMERI, R. ABE, A. BRASSARD et. al.

Basic information

Original name

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

Authors

INGEN-HOUSZ-ORO, S. (guarantor), V. SCHMIDT, M. M. AMERI, R. ABE, A. BRASSARD, A. MOSTAGHIMI, A. S. PALLER, A. ROMANO, B. DIDONA, B. H. KAFFENBERGER, B. BEN SAID, B. Y. H. THONG, B. RAMSAY, Eva BŘEZINOVÁ (203 Czech Republic, belonging to the institution), B. MILPIED, C. G. MORTZ, C. Y. CHU, C. SOTOZONO, J. GUEUDRY, D. G. FORTUNE, S. M. DRIDI, D. TARTAR, G. DO-PHAM, E. GABISON, E. J. PHILLIPS, F. LEWIS, C. SALAVASTRU, B. HORVATH, J. DART, J. SETTERFIELD, J. NEWMAN, J. T. SCHULZ, A. DELCAMPE, K. BROCKOW, L. SEMINARIO-VIDAL, L. JOERG, M. P. WATSON, M. GONCALO, M. LUCAS, M. TORRES, M. H. NOE, N. HAMA, N. H. SHEAR, P. REILLY, P. WOLKENSTEIN, P. ROMANELLI, R. P. DODIUK-GAD, R. G. MICHELETTI, G. S. TIPLICA, R. SHERIDAN, S. RAUZ, S. AHMAD, S. L. CHUA, T. H. FLYNN, W. PICHLER, S. T. LE, E. MAVERAKIS, S. WALSH, L. E. FRENCH and M. C. BRUGGEN

Edition

Orphanet Journal of Rare Diseases, London, BMC, 2023, 1750-1172

Other information

Language

English

Type of outcome

Článek v odborném periodiku

Field of Study

30216 Dermatology and venereal diseases

Country of publisher

United Kingdom of Great Britain and Northern Ireland

Confidentiality degree

není předmětem státního či obchodního tajemství

References:

URL

Impact factor

Impact factor: 3.700 in 2022

RIV identification code

RIV/00216224:14110/23:00130693

Organization unit

Faculty of Medicine

DOI

http://dx.doi.org/10.1186/s13023-023-02631-7

UT WoS

000949025400003

Keywords in English

Epidermal necrolysis; Stevens-Johnson syndrome; Toxic epidermal necrolysis; Sequelae; Quality of life; Delphi; Consensus

Abstract

V originále

BackgroundLong-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.ObjectivesWe conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.MethodsParticipants 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.ResultsFifty-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.ConclusionsOur DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.

Citovat

INGEN-HOUSZ-ORO, S., V. SCHMIDT, M. M. AMERI, R. ABE, A. BRASSARD, A. MOSTAGHIMI, A. S. PALLER, A. ROMANO, B. DIDONA, B. H. KAFFENBERGER, B. BEN SAID, B. Y. H. THONG, B. RAMSAY, Eva BŘEZINOVÁ, B. MILPIED, C. G. MORTZ, C. Y. CHU, C. SOTOZONO, J. GUEUDRY, D. G. FORTUNE, S. M. DRIDI, D. TARTAR, G. DO-PHAM, E. GABISON, E. J. PHILLIPS, F. LEWIS, C. SALAVASTRU, B. HORVATH, J. DART, J. SETTERFIELD, J. NEWMAN, J. T. SCHULZ, A. DELCAMPE, K. BROCKOW, L. SEMINARIO-VIDAL, L. JOERG, M. P. WATSON, M. GONCALO, M. LUCAS, M. TORRES, M. H. NOE, N. HAMA, N. H. SHEAR, P. REILLY, P. WOLKENSTEIN, P. ROMANELLI, R. P. DODIUK-GAD, R. G. MICHELETTI, G. S. TIPLICA, R. SHERIDAN, S. RAUZ, S. AHMAD, S. L. CHUA, T. H. FLYNN, W. PICHLER, S. T. LE, E. MAVERAKIS, S. WALSH, L. E. FRENCH and M. C. BRUGGEN. Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus. Orphanet Journal of Rare Diseases. London: BMC, 2023, vol. 18, No 1, p. 1-10. ISSN 1750-1172. Available from: https://dx.doi.org/10.1186/s13023-023-02631-7.

@article{2279445,
   author = {IngenandHouszandOro, S. and Schmidt, V. and Ameri, M. M. and Abe, R. and Brassard, A. and Mostaghimi, A. and Paller, A. S. and Romano, A. and Didona, B. and Kaffenberger, B. H. and Ben Said, B. and Thong, B. Y. H. and Ramsay, B. and Březinová, Eva and Milpied, B. and Mortz, C. G. and Chu, C. Y. and Sotozono, C. and Gueudry, J. and Fortune, D. G. and Dridi, S. M. and Tartar, D. and DoandPham, G. and Gabison, E. and Phillips, E. J. and Lewis, F. and Salavastru, C. and Horvath, B. and Dart, J. and Setterfield, J. and Newman, J. and Schulz, J. T. and Delcampe, A. and Brockow, K. and SeminarioandVidal, L. and Joerg, L. and Watson, M. P. and Goncalo, M. and Lucas, M. and Torres, M. and Noe, M. H. and Hama, N. and Shear, N. H. and Reilly, P. and Wolkenstein, P. and Romanelli, P. and DodiukandGad, R. P. and Micheletti, R. G. and Tiplica, G. S. and Sheridan, R. and Rauz, S. and Ahmad, S. and Chua, S. L. and Flynn, T. H. and Pichler, W. and Le, S. T. and Maverakis, E. and Walsh, S. and French, L. E. and Bruggen, M. C.},
   article_location = {London},
   article_number = {1},
   doi = {http://dx.doi.org/10.1186/s13023-023-02631-7},
   keywords = {Epidermal necrolysis; Stevens-Johnson syndrome; Toxic epidermal necrolysis; Sequelae; Quality of life; Delphi; Consensus},
   language = {eng},
   issn = {1750-1172},
   journal = {Orphanet Journal of Rare Diseases},
   title = {Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus},
   url = {https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02631-7},
   volume = {18},
   year = {2023}
}

TY  - JOUR
ID  - 2279445
AU  - 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. - Březinová, Eva - 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. - Joerg, L. - Watson, M. P. - Goncalo, M. - Lucas, M. - Torres, M. - Noe, M. H. - Hama, N. - Shear, N. H. - 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. - Bruggen, M. C.
PY  - 2023
TI  - Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
JF  - Orphanet Journal of Rare Diseases
VL  - 18
IS  - 1
SP  - 1-10
EP  - 1-10
PB  - BMC
SN  - 17501172
KW  - Epidermal necrolysis
KW  - Stevens-Johnson syndrome
KW  - Toxic epidermal necrolysis
KW  - Sequelae
KW  - Quality of life
KW  - Delphi
KW  - Consensus
UR  - https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02631-7
N2  - BackgroundLong-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.ObjectivesWe conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.MethodsParticipants 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.ResultsFifty-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.ConclusionsOur DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.
ER  -

INGEN-HOUSZ-ORO, S., V. SCHMIDT, M. M. AMERI, R. ABE, A. BRASSARD, A. MOSTAGHIMI, A. S. PALLER, A. ROMANO, B. DIDONA, B. H. KAFFENBERGER, B. BEN SAID, B. Y. H. THONG, B. RAMSAY, Eva BŘEZINOVÁ, B. MILPIED, C. G. MORTZ, C. Y. CHU, C. SOTOZONO, J. GUEUDRY, D. G. FORTUNE, S. M. DRIDI, D. TARTAR, G. DO-PHAM, E. GABISON, E. J. PHILLIPS, F. LEWIS, C. SALAVASTRU, B. HORVATH, J. DART, J. SETTERFIELD, J. NEWMAN, J. T. SCHULZ, A. DELCAMPE, K. BROCKOW, L. SEMINARIO-VIDAL, L. JOERG, M. P. WATSON, M. GONCALO, M. LUCAS, M. TORRES, M. H. NOE, N. HAMA, N. H. SHEAR, P. REILLY, P. WOLKENSTEIN, P. ROMANELLI, R. P. DODIUK-GAD, R. G. MICHELETTI, G. S. TIPLICA, R. SHERIDAN, S. RAUZ, S. AHMAD, S. L. CHUA, T. H. FLYNN, W. PICHLER, S. T. LE, E. MAVERAKIS, S. WALSH, L. E. FRENCH and M. C. BRUGGEN. Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus. \textit{Orphanet Journal of Rare Diseases}. London: BMC, 2023, vol.~18, No~1, p.~1-10. ISSN~1750-1172. Available from: https://dx.doi.org/10.1186/s13023-023-02631-7.

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