期刊
ORPHANET JOURNAL OF RARE DISEASES
卷 18, 期 1, 页码 -出版社
BMC
DOI: 10.1186/s13023-023-02631-7
关键词
Epidermal necrolysis; Stevens-Johnson syndrome; Toxic epidermal necrolysis; Sequelae; Quality of life; Delphi; Consensus
This study used a DELPHI exercise to establish a multidisciplinary expert consensus on the management of SJS/TEN sequelae. After the survey, a consensus was obtained for 100% of the initially proposed statements. The final consensus will help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.
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.
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