Ingen-Housz-Oro etal.Orphanet Journal ofOrphanet Joumal of Rare Diseases(2023)1&33https:/dol.org/10.1186s13023-023-02631-7Rare DiseasesPOSITION STATEMENTOpen AccessPost-acute phase and sequelaeeck 1omanagement of epidermal necrolysis:an international,multidisciplinary DELPHI-basedconsensusS.Ingen-Housz-OroV.Schmidtst,M.M.Amer,R.Abe,A.Brassard,A.MostaghimiA.S.Paller,A.Romano,B.Didona1,B.H.Kaffenberger,B.Ben Said23.16,B.Y.H.Thong,B.RamsayE.Brezinova219,B.Milpied232,C.G.Mortz,CY.Chu22,C.Sotozono2,J.Gueudry3D.G.Fortune25,S.M.Dridi2,D.Tartar2,G.Do-Pham38E.Gabison2,E.J.Phillips0 F.Lewis31,C.Salavastru232,B.Horvath233J.Dart .Setterfield235 Newman3J.T.Schulz,A.Delcampe23K.Brockow,L.Seminario-VidalL.Jorg741 M.P.Watson2,M.Goncalo,M.Lucas461,M.Torres5,M.H.Noe6,N.Hama,N.H.Shear762POReilly48,P.Wolkenstein,P Romanelli,R.P.Dodiuk-Gad,R.G.MichelettiG.S.Tiplica5R.Sheridan5S.RauS.AhmadS.L.Chua255,T.H.Flynn56,W.Pichler7,S.T.Le,E.Maverakis0,S.Walsh23,L.E.French25859t and M.C.Bruggen267AbstractBackground Long-term sequelae are frequent and often disabling after epidermal necrolysis(Stevens-Johnsonsyndrome(SJS)and toxic epidermal necrolysis (TEN).However,consensus on the modalities of management of thesesequelae is lacking.Objectives We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert con-sensus 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 organizedinto 8 topics:general recommendations,professionals involved,skin,oral mucosa and teeth,eyes,genital area,mentalhealth,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 Appropri-ateness Method."S.Ingen-Housz-Oro and V.Schmidt contributed equallyLE.French and M.C.Bruggen contributed equallyCorrespondence:S.Ingen-Housz-Orosaskiaoro@aphpfrM.M.Amerisaskiaoro@aphpfrFull list of author infor mation is available at the end of the articleBMCThe Author(s)2023.Open AccessThis artidle is licensed undera Creative Commons Attribution 40 Intemnational License,whichpermits use,sharing adaptation,distribution and repoducton in any medium orfomat as long as you give appropriateceditto theofiginal author(s)and the source,provide a link to the Ceative Commons licence,and indicate if changes wee made.The images orther third party materalin thisaridle areinduded in the artids,unless indicated otherwise in acredit lineto the materiaL lf materalis notinduded in theartide's Creative Commons lcence and your intended use is not pemitted by statutoryregulation orexceeds the pemitted use you will need to obtain permission directly fom the copyright holder.To view a copy of thislicence,vist http//creativecommonsog/licenses/by/40y.The Ceative Commons Public Domain Dedication waiver(http//ceativecommonsorg/publcdomain/zero/10)a
