Development of Multidisciplinary Consensus‐Informed Guidance for the Management of Paediatric Stevens–Johnson Syndrome and Toxic Epidermal Necrolysis Among Clinicians From Australasian Tertiary Referral Hospitals

BACKGROUND: Paediatric Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) is a rare, severe mucocutaneous reaction requiring coordinated multidisciplinary care. Existing guidelines provide evidence-based recommendations, but implementation across tertiary paediatric hospitals requires practical consensus on local resources. AIM: To develop and evaluate multidisciplinary consensus-informed practical clinical guidance for assessment and management of paediatric SJS/TEN among clinicians from Australasian tertiary referral hospitals. METHODS: A draft guidance document was developed after review of SJS/TEN guidelines, systematic reviews and other relevant literature. Clinicians from one tertiary paediatric centre (Group A) and other Australian and New Zealand tertiary centres (Group B) completed a 130-item questionnaire. Continuous items were scored on a 1-9 Likert scale. Categorical items addressed referral urgency and whether investigations should be routine, reasonable but not routine, or not ordered. Quantitative responses and free-text comments informed revision. RESULTS: Twenty-two multidisciplinary clinicians from the internal centre and nine clinicians from eight external centres participated. Agreement was high for history, examination, supportive care, multidisciplinary involvement, discharge planning and follow-up. Uncertainty remained regarding fluid requirements compared with burns patients, the scope of initial investigations and systemic immunomodulatory therapy. The guidance was revised to emphasise individualised fluid management, directed differential diagnosis and testing, and case-by-case systemic therapy. CONCLUSIONS: This practical multidisciplinary consensus-informed guidance supports paediatric SJS/TEN care in Australasian tertiary referral hospitals. Its contribution is the quantified consultative process and identification of consistent, variable and uncertain practice. It complements, rather than replaces, existing guidelines.

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Journal
Journal of Paediatrics and Child Health
Published
2026-05-31
DOI
https://doi.org/10.1111/jpc.70435
Primary Topic
Drug-Induced Adverse Reactions
Type
article
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article

Development of Multidisciplinary Consensus‐Informed Guidance for the Management of Paediatric Stevens–Johnson Syndrome and Toxic Epidermal Necrolysis Among Clinicians From Australasian Tertiary Referral Hospitals

Marius Rademaker, Emma King, Erin Mewton, Orli Wargon et al.
Journal of Paediatrics and Child Health
Drug-Induced Adverse Reactions
article

Development of Multidisciplinary Consensus‐Informed Guidance for the Management of Paediatric Stevens–Johnson Syndrome and Toxic Epidermal Necrolysis Among Clinicians From Australasian Tertiary Referral Hospitals

Marius Rademaker, Emma King, Erin Mewton, Orli Wargon, Warick Teague, Patrick Mahar, Li‐Chuen Wong, Laura Scardamaglia, Joanne Grindlay, Claire Grills, Emma McDonald, Thomas Lee, Katherine Dear, Ashan Fernando, Anu Matthew, Julian Kelly, Mark Oliver, Sonia R Grover, Kiri Chan, Amy Gray, David; id_orcid 0000-0002-0038-9496 Orchard, Susan Robertson, Danni Bao, Anne Halbert, Ryan Toholka, Diana Purvis, Stephanie Weston, Thomas Rozen, Vanessa Morgan, Gayle Fischer, Danielle Nizzero, Nicole Alexander, Monique Bertinetti
article en

Abstract

BACKGROUND: Paediatric Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) is a rare, severe mucocutaneous reaction requiring coordinated multidisciplinary care. Existing guidelines provide evidence-based recommendations, but implementation across tertiary paediatric hospitals requires practical consensus on local resources. AIM: To develop and evaluate multidisciplinary consensus-informed practical clinical guidance for assessment and management of paediatric SJS/TEN among clinicians from Australasian tertiary referral hospitals. METHODS: A draft guidance document was developed after review of SJS/TEN guidelines, systematic reviews and other relevant literature. Clinicians from one tertiary paediatric centre (Group A) and other Australian and New Zealand tertiary centres (Group B) completed a 130-item questionnaire. Continuous items were scored on a 1-9 Likert scale. Categorical items addressed referral urgency and whether investigations should be routine, reasonable but not routine, or not ordered. Quantitative responses and free-text comments informed revision. RESULTS: Twenty-two multidisciplinary clinicians from the internal centre and nine clinicians from eight external centres participated. Agreement was high for history, examination, supportive care, multidisciplinary involvement, discharge planning and follow-up. Uncertainty remained regarding fluid requirements compared with burns patients, the scope of initial investigations and systemic immunomodulatory therapy. The guidance was revised to emphasise individualised fluid management, directed differential diagnosis and testing, and case-by-case systemic therapy. CONCLUSIONS: This practical multidisciplinary consensus-informed guidance supports paediatric SJS/TEN care in Australasian tertiary referral hospitals. Its contribution is the quantified consultative process and identification of consistent, variable and uncertain practice. It complements, rather than replaces, existing guidelines.

Journal of Paediatrics and Child Health
The University of Sydney (AU), The Royal Melbourne Hospital (AU), Royal Children's Hospital (AU), The University of Melbourne (AU), Royal North Shore Hospital (AU), Princess Margaret Hospital for Children (AU), Children's Hospital at Westmead (AU), UNSW Sydney (AU), Footscray Hospital (AU), Western Health (AU), Monash Health (AU), Sydney Children's Hospital (AU), Clinical Trials New Zealand (NZ), Starship Children's Health (NZ), Murdoch Children's Research Institute (AU), Skin Health Institute (AU), Monash University (AU)
Openalex Percentile: Top 6%
Drug-Induced Adverse Reactions
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