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

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A draft guidance document was developed after review of SJS/TEN guidelines, systematic reviews and other relevant literature.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.