Expert consensus on oral management in autoimmune bullous diseases, erythema multiforme and <scp>SJS</scp> / <scp>TEN</scp>

BACKGROUND: Autoimmune bullous diseases (AIBD), Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS-TEN) and erythema multiforme (EM) often present with clinically similar features in the oral mucosa: classically widespread mucosal erosions or ulceration. Despite this, there are no formalized guidelines for the specific management of the oral manifestations of these conditions. OBJECTIVES: We sought to establish an consensus on the management of oral involvement of AIBD, SJS-TEN and EM using the Delphi method. METHODS: Participants were sent a survey comprising 62 statements organized into 6 categories: general oral and dental recommendations; disease severity scoring; topical therapies for active oral involvement in AIBD; systemic therapies for active oral involvement in AIBD; additional considerations for inpatient care of AIBD, EM, SJS-TEN; specific considerations for EM and SJS-TEN. Participants rated the level of appropriateness of each statement. Results were analysed using the RAND/UCLA Appropriateness Method. RESULTS: 34 experts, primarily Oral Medicine clinicians and Dermatologists, completed the survey. Consensus was achieved for 58 (93.5%) statements after a single round. General recommendations included rigorous oral hygiene and regular dental/periodontal care. Disease-specific severity scoring was recommended to guide treatment and monitor response. For active oral AIBD, experts recommended moderate-to-super potent topical corticosteroids, guided by severity and site of oral disease. For inpatients, supported oral hygiene, regular topical anaesthetics and nutritional support for impaired intake were recommended. For acute EM and SJS-TEN, recommendations included regular lip care with gentle debridement of haemorrhagic crusts and application of soft paraffin. CONCLUSIONS: This Delphi sets out a broad framework for the management of oral involvement in AIBD, SJS-TEN and EM, to be adapted by a multidisciplinary team, for both acute and long-term management of these conditions. It may help to standardize the management of oral manifestations of these conditions in future multicentre studies.

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Journal
Journal of the European Academy of Dermatology and Venereology
Published
2026-07-22
DOI
https://doi.org/10.1111/jdv.70578
Primary Topic
Autoimmune Bullous Skin Diseases
Type
article
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article

Expert consensus on oral management in autoimmune bullous diseases, erythema multiforme and SJS / TEN

Konstantina Delli, Mahtab Samimi, Brailo, M Carrozzo et al.
Journal of the European Academy of Dermatology and Venereology
Autoimmune Bullous Skin Diseases
article

Expert consensus on oral management in autoimmune bullous diseases, erythema multiforme and SJS / TEN

Konstantina Delli, Mahtab Samimi, Brailo, M Carrozzo, Krisztián Gáspár, Sabine Jurge, S. Oro, Sarah Walsh, Shalini Nayee, Helen McParland, Dedee Murrell, Daniel Creamer, Ana Poveda‐Gallego, P. Joly, Martyn Ormond, Milad Ameri, Enno Schmidt, Molly Harte, Marie-Charlotte Brüeggen, Skaidra Valiukevičienė, Lars French, Sophie‐Myriam Dridi, Christopher Bunker, Roddy McMillan, Michael Ardern-Jones, Jane Setterfield, E Hullah, Roni Dodiuk-Gad, Márcio Diniz‐Freitas, Barbara Carey, Jon Higham, Jennifer Taylor, Donna Culton, Amanda Willis, Martina Shephard, Tom Sollecito, Barbara Horvarth, Anne‐Laure Ejeil, Ser‐Ling Chua, Sonur Uzun
article en

Abstract

BACKGROUND: Autoimmune bullous diseases (AIBD), Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS-TEN) and erythema multiforme (EM) often present with clinically similar features in the oral mucosa: classically widespread mucosal erosions or ulceration. Despite this, there are no formalized guidelines for the specific management of the oral manifestations of these conditions. OBJECTIVES: We sought to establish an consensus on the management of oral involvement of AIBD, SJS-TEN and EM using the Delphi method. METHODS: Participants were sent a survey comprising 62 statements organized into 6 categories: general oral and dental recommendations; disease severity scoring; topical therapies for active oral involvement in AIBD; systemic therapies for active oral involvement in AIBD; additional considerations for inpatient care of AIBD, EM, SJS-TEN; specific considerations for EM and SJS-TEN. Participants rated the level of appropriateness of each statement. Results were analysed using the RAND/UCLA Appropriateness Method. RESULTS: 34 experts, primarily Oral Medicine clinicians and Dermatologists, completed the survey. Consensus was achieved for 58 (93.5%) statements after a single round. General recommendations included rigorous oral hygiene and regular dental/periodontal care. Disease-specific severity scoring was recommended to guide treatment and monitor response. For active oral AIBD, experts recommended moderate-to-super potent topical corticosteroids, guided by severity and site of oral disease. For inpatients, supported oral hygiene, regular topical anaesthetics and nutritional support for impaired intake were recommended. For acute EM and SJS-TEN, recommendations included regular lip care with gentle debridement of haemorrhagic crusts and application of soft paraffin. CONCLUSIONS: This Delphi sets out a broad framework for the management of oral involvement in AIBD, SJS-TEN and EM, to be adapted by a multidisciplinary team, for both acute and long-term management of these conditions. It may help to standardize the management of oral manifestations of these conditions in future multicentre studies.

Journal of the European Academy of Dermatology and Venereology
Université de Tours (FR), University of North Carolina at Chapel Hill (US), Belfast Health and Social Care Trust (GB), Guy's Hospital (GB), University Hospitals Birmingham NHS Foundation Trust (GB), Lithuanian University of Health Sciences (LT), University of Debrecen (HU), University Medical Center Groningen (NL), University College London Hospitals NHS Foundation Trust (GB), University Hospital Centre Zagreb (HR), Inserm (FR), University of Groningen (NL), King's College London (GB), Université Paris-Est Créteil (FR), Akdeniz University (TR), Guy's and St Thomas' NHS Foundation Trust (GB), Universidade de Santiago de Compostela (ES), University of Zurich (CH), Université Paris Cité (FR), Emek Medical Center (IL), University of Dental Medicine (MM), University Hospital Southampton NHS Foundation Trust (GB), LMU Klinikum (DE), Glasgow Life (GB), Sorbonne Paris Cité (FR), Centre Hospitalier Universitaire de Tours (FR), Universitäres Kinderwunschzentrum Lübeck (DE), Hôpital Bretonneau (FR), University Hospital of Zurich (CH), Sheffield Teaching Hospitals NHS Foundation Trust (GB), STMicroelectronics (France) (FR), Normandie Université (FR), Laboratoire National de Référence (MA), University Hospital Schleswig-Holstein (DE), Birmingham Dental Hospital (GB), Newcastle Dental Hospital (GB), St George Hospital (AU), Hôpitaux Universitaires Henri-Mondor (FR), Cognition Behaviour Technology (FR), Instituto de Investigación Sanitaria de Santiago (ES), King's College Hospital (GB), University College London (GB), Université de Rouen Normandie (FR), Medical University of Vienna (AT), University of Glasgow (GB), University of Pennsylvania (US), Ludwig-Maximilians-Universität München (DE), University of Lübeck (DE)
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