- Ingen-Housz-Oro, S;
- Schmidt, V;
- Ameri, MM;
- Abe, R;
- Brassard, A;
- Mostaghimi, A;
- Paller, AS;
- Romano, A;
- Didona, B;
- Kaffenberger, BH;
- Ben Said, B;
- Thong, BYH;
- Ramsay, B;
- Brezinova, E;
- Milpied, B;
- Mortz, CG;
- Chu, CY;
- Sotozono, C;
- Gueudry, J;
- Fortune, DG;
- Dridi, SM;
- Tartar, D;
- Do-Pham, G;
- Gabison, E;
- Phillips, EJ;
- Lewis, F;
- Salavastru, C;
- Horvath, B;
- Dart, J;
- Setterfield, J;
- Newman, J;
- Schulz, JT;
- Delcampe, A;
- Brockow, K;
- Seminario-Vidal, L;
- Jörg, L;
- Watson, MP;
- Gonçalo, M;
- Lucas, M;
- Torres, M;
- Noe, MH;
- Hama, N;
- Shear, NH;
- O’Reilly, P;
- Wolkenstein, P;
- Romanelli, P;
- Dodiuk-Gad, RP;
- Micheletti, RG;
- Tiplica, GS;
- Sheridan, R;
- Rauz, S;
- Ahmad, S;
- Chua, SL;
- Flynn, TH;
- Pichler, W;
- Le, ST;
- Maverakis, E;
- Walsh, S;
- French, LE;
- Brüggen, MC
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.