Ingen-Housz-Oro, SSIngen-Housz-OroSchmidt, VVSchmidtAmeri, M MM MAmeriAbe, RRAbeBrassard, AABrassardMostaghimi, AAMostaghimiPaller, A SA SPallerRomano, AARomanoDidona, BBDidonaKaffenberger, B HB HKaffenbergerBen Said, BBBen SaidThong, B Y HB Y HThongRamsay, BBRamsayBrezinova, EEBrezinovaMilpied, BBMilpiedMortz, C GC GMortzChu, C YC YChuSotozono, CCSotozonoGueudry, JJGueudryFortune, D GD GFortuneDridi, S MS MDridiTartar, DDTartarDo-Pham, GGDo-PhamGabison, EEGabisonPhillips, E JE JPhillipsLewis, FFLewisSalavastru, CCSalavastruHorvath, BBHorvathDart, JJDartSetterfield, JJSetterfieldNewman, JJNewmanSchulz, J TJ TSchulzDelcampe, AADelcampeBrockow, KKBrockowSeminario-Vidal, LLSeminario-VidalJörg, LukasLukasJörg0000-0003-1512-4279Watson, M PM PWatsonGonçalo, MMGonçaloLucas, MMLucasTorres, MMTorresNoe, M HM HNoeHama, NNHamaShear, N HN HShearO'Reilly, PPO'ReillyWolkenstein, PPWolkensteinRomanelli, PPRomanelliDodiuk-Gad, R PR PDodiuk-GadMicheletti, R GR GMichelettiTiplica, G SG STiplicaSheridan, RRSheridanRauz, SSRauzAhmad, SSAhmadChua, S LS LChuaFlynn, T HT HFlynnPichler, WWPichlerLe, S TS TLeMaverakis, EEMaverakisWalsh, SSWalshFrench, L EL EFrenchBrüggen, M CM CBrüggen2024-10-252024-10-252023-02-22https://boris-portal.unibe.ch/handle/20.500.12422/164442BACKGROUND 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.enConsensus Delphi Epidermal necrolysis Quality of life Sequelae Stevens-Johnson syndrome Toxic epidermal necrolysis600 - Technology::610 - Medicine & healtharticle10.48350/1791723681425510.1186/s13023-023-02631-7