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

S. Ingen-Housz-Oro*, V. Schmidt, M. M. Ameri, R. Abe, A. Brassard, A. Mostaghimi, A. S. Paller, A. Romano, B. Didona, B. H. Kaffenberger, B. Ben Said, B. Y.H. Thong, B. Ramsay, E. Brezinova, B. Milpied, C. G. Mortz, C. Y. Chu, C. Sotozono, J. Gueudry, D. G. FortuneS. M. Dridi, D. Tartar, G. Do-Pham, E. Gabison, E. J. Phillips, F. Lewis, C. Salavastru, B. Horvath, J. Dart, J. Setterfield, J. Newman, J. T. Schulz, A. Delcampe, K. Brockow, L. Seminario-Vidal, L. Jörg, M. P. Watson, M. Gonçalo, M. Lucas, M. Torres, M. H. Noe, N. Hama, N. H. Shear, P. O’Reilly, P. Wolkenstein, P. Romanelli, R. P. Dodiuk-Gad, R. G. Micheletti, G. S. Tiplica, R. Sheridan, S. Rauz, S. Ahmad, S. L. Chua, T. H. Flynn, W. Pichler, S. T. Le, E. Maverakis, S. Walsh, L. E. French, M. C. Brüggen

*Corresponding author for this work

Research output: Contribution to journalJournal articleResearchpeer-review

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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.

Original languageEnglish
Article number33
JournalOrphanet Journal of Rare Diseases
Number of pages10
Publication statusPublished - 22. Feb 2023


  • Consensus
  • Delphi
  • Epidermal necrolysis
  • Quality of life
  • Sequelae
  • Stevens-Johnson syndrome
  • Toxic epidermal necrolysis
  • Humans
  • Stevens-Johnson Syndrome/complications
  • Skin
  • Disease Progression


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