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


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 < 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.

SUBMITTER: Ingen-Housz-Oro S 

PROVIDER: S-EPMC9945700 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

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Publications

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

Ingen-Housz-Oro S S   Schmidt V V   Ameri M M MM   Abe R R   Brassard A A   Mostaghimi A A   Paller A S AS   Romano A A   Didona B B   Kaffenberger B H BH   Ben Said B B   Thong B Y H BYH   Ramsay B B   Brezinova E E   Milpied B B   Mortz C G CG   Chu C Y CY   Sotozono C C   Gueudry J J   Fortune D G DG   Dridi S M SM   Tartar D D   Do-Pham G G   Gabison E E   Phillips E J EJ   Lewis F F   Salavastru C C   Horvath B B   Dart J J   Setterfield J J   Newman J J   Schulz J T JT   Delcampe A A   Brockow K K   Seminario-Vidal L L   Jörg L L   Watson M P MP   Gonçalo M M   Lucas M M   Torres M M   Noe M H MH   Hama N N   Shear N H NH   O'Reilly P P   Wolkenstein P P   Romanelli P P   Dodiuk-Gad R P RP   Micheletti R G RG   Tiplica G S GS   Sheridan R R   Rauz S S   Ahmad S S   Chua S L SL   Flynn T H TH   Pichler W W   Le S T ST   Maverakis E E   Walsh S S   French L E LE   Brüggen M C MC  

Orphanet journal of rare diseases 20230222 1


<h4>Background</h4>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.<h4>Objectives</h4>We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.<h4>Methods</h4>Participants were sent a survey via  ...[more]

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