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

S Ingen-Housz-Oro; 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; E Brezinova; 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 Jörg; M P Watson; M Gonçalo; M Lucas; M Torres; M H Noe; N Hama; N H Shear; P O'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; M C Brüggen

doi:10.1186/s13023-023-02631-7

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

Journal article

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

S Ingen-Housz-Oro, V Schmidt, M M Ameri, R Abe, A Brassard, A Mostaghimi, A S Paller, A Romano, B Didona, B H Kaffenberger, …

Orphanet journal of rare diseases, Vol.18(1), 33

2023

DOI: https://doi.org/10.1186/s13023-023-02631-7

PMID: 36814255

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Abstract

Consensus

Disease Progression

Humans

Skin

Stevens-Johnson Syndrome - complications

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.

Details

Title: Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
Authors/Creators: S Ingen-Housz-Oro - EpiDermE, Université Paris Est Créteil, Créteil, France. saskia.oro@aphp.fr
V Schmidt - University Hospital of Basel
M M Ameri - University of Zurich
R Abe - Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan
A Brassard - University of California Davis Medical Center
A Mostaghimi - Brigham and Women's Hospital
A S Paller - Northwestern University
A Romano - Oasi Research Institute-IRCCS, Troina, Italy
B Didona - European Clinical Research Infrastructure Network
B H Kaffenberger - European Clinical Research Infrastructure Network
B Ben Said - European Clinical Research Infrastructure Network
B Y H Thong - Tan Tock Seng Hospital
B Ramsay - University Hospital Limerick
E Brezinova - European Clinical Research Infrastructure Network
B Milpied - Department of Adult and Pediatric Dermatology, Bordeaux University Hospitals, Bordeaux, France
C G Mortz - Department of Dermatology and Allergy Center, Odense Research Center for Anaphylaxis (ORCA), Odense University Hospital, Odense, Denmark
C Y Chu - National Taiwan University Hospital
C Sotozono - Department of Ophthalmology, Kyoto Prefectural University of Medicine, 465 Kajii-Cho, Hirokoji-Agaru, Kawaramach-Dori, Kamigyo-Ku, Kyoto, 602-0841, Japan
J Gueudry - Hôpital Charles-Nicolle
D G Fortune - University of Limerick
S M Dridi - Hôpital Saint Roch
D Tartar - University of California, Davis
G Do-Pham - Hôpital Intercommunal de Créteil
E Gabison - Fondation Ophtalmologique Adolphe de Rothschild
E J Phillips - Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA
F Lewis - St Thomas' Hospital
C Salavastru - European Clinical Research Infrastructure Network
B Horvath - University Medical Center Groningen
J Dart - Moorfields Eye Hospital NHS Foundation Trust, The UCL Institute of Ophthalmology, London, UK
J Setterfield - European Clinical Research Infrastructure Network
J Newman - King's College Hospital NHS Foundation Trust
J T Schulz - Massachusetts General Hospital
A Delcampe - Hôpital Charles-Nicolle
K Brockow - Technical University of Munich
L Seminario-Vidal - University of South Florida
L Jörg - University Hospital of Bern
M P Watson - Cornea and External Eye Disease Service, Moorfields Eye Hospital, London, UK
M Gonçalo - University of Coimbra
M Lucas - Sir Charles Gairdner Hospital
M Torres - Allergy Unit, IBIMA-Regional University Hospital of Malaga-UMA, Málaga, Spain
M H Noe - Brigham and Women's Hospital
N Hama - Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan
N H Shear - University of Toronto
P O'Reilly - University of Limerick
P Wolkenstein - Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France
P Romanelli - University of Miami
R P Dodiuk-Gad - Emek Medical Center
R G Micheletti - University of Pennsylvania
G S Tiplica - Carol Davila University of Medicine and Pharmacy
R Sheridan - Harvard University
S Rauz - Birmingham and Midland Eye Centre
S Ahmad - Moorfields Eye Hospital NHS Foundation Trust
S L Chua - University Hospitals Birmingham NHS Foundation Trust
T H Flynn - Ophthalmology, Bon Secours Hospital, Cork, Ireland
W Pichler - ADR-AC GmbH, Bern, Switzerland
S T Le - University of California Davis Medical Center
E Maverakis - University of California Davis Medical Center
S Walsh - European Clinical Research Infrastructure Network
L E French - Ludwig-Maximilians-Universität München
M C Brüggen - University of Zurich
Publication Details: Orphanet journal of rare diseases, Vol.18(1), 33
Publisher: BioMed Central Ltd unless otherwise stated. Part of Springer Nature.
Identifiers: 991005597069507891
Murdoch Affiliation: Institute for Immunology and Infectious Diseases
Language: English
Resource Type: Journal article

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Collaboration types: Domestic collaboration; International collaboration
Citation topics: 1 Clinical & Life Sciences; 1.265 Dermatology - Skin Allergies; 1.265.1140 Drug Hypersensitivity
Web Of Science research areas: Genetics & Heredity; Medicine, Research & Experimental
ESI research areas: Clinical Medicine