Back to Search Start Over

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

Authors :
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
Source :
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-10 (2023)
Publication Year :
2023
Publisher :
BMC, 2023.

Abstract

Abstract 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

Details

Language :
English
ISSN :
17501172
Volume :
18
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Orphanet Journal of Rare Diseases
Publication Type :
Academic Journal
Accession number :
edsdoj.03fab2d6e5c44c33a299e7696bc863e7
Document Type :
article
Full Text :
https://doi.org/10.1186/s13023-023-02631-7