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A draft guidance document was developed after review of SJS/TEN guidelines, systematic reviews and other relevant literature.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.
Keywords: paediatric dermatology, Stevens–Johnson syndrome, toxic epidermal necrolysis
1. Aim
Stevens–Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) are rare, severe and potentially fatal mucocutaneous reactions characterised by epidermal necrosis and detachment, most commonly triggered by medications or infection. SJS, SJS/TEN overlap and TEN are commonly classified according to the extent of epidermal detachment: less than 10%, 10%–30% and greater than 30% total body surface area, respectively [1, 2].
The evidence base for paediatric SJS/TEN management remains limited by the rarity of the disease and the difficulty of conducting adequately powered interventional studies. International guidelines, including the British Association of Dermatologists paediatric guideline and adult SJS/TEN guidance, provide important evidence‐based recommendations [3, 4, 5]. However, tertiary referral hospitals differ in available specialty services, burn‐care access, wound‐care products, staffing models and referral pathways.
Within the primary hospital where the first component of this study was undertaken, care is usually shared by paediatrics, dermatology and burn teams, with ophthalmology, pain, critical care, gynaecology/urology, infectious diseases, allied health and other teams involved according to clinical need. Because management crosses specialty boundaries, a locally usable guidance document was developed and then tested through a structured internal and external multidisciplinary consultation and agreement process.
The aim of this study was to describe the development of multidisciplinary consensus‐informed practical clinical guidance for paediatric SJS/TEN and to quantify multidisciplinary agreement with its recommendations among clinicians from Australasian tertiary referral hospitals.
2. Methods
An initial review of international paediatric SJS/TEN guidelines, adult SJS/TEN guidelines, systematic reviews and relevant clinical literature was undertaken. This included literature addressing diagnostic assessment, differential diagnosis, skin and mucosal care, supportive care, systemic therapies, discharge planning and long‐term complications.
This was a pragmatic literature review rather than a systematic review. Priority was given to paediatric SJS/TEN guidelines, adult SJS/TEN guidelines where paediatric evidence was absent, systematic reviews, Delphi/consensus statements and clinically relevant primary studies addressing contested areas.
A draft SJS/TEN management document was prepared by the principal author with input from clinicians from relevant specialties. A multidisciplinary panel was then invited to complete a questionnaire containing 130 statements relating to the draft document. If an item was outside a clinician's role or experience, they were asked not to score that item. This was a structured multidisciplinary consultation and agreement exercise, not a formal Delphi process.
The initial group (Group A) comprised clinicians from a single tertiary paediatric referral centre. Following the internal exercise, invitations were extended to clinicians from other Australian and New Zealand tertiary referral hospitals (Group B). Participants included paediatricians, paediatric dermatologists, paediatric burn surgeons, paediatric plastic and reconstructive surgeons, paediatric gynaecologists, a paediatric emergency physician, a paediatric intensive care physician, a paediatric gastroenterologist, a paediatric clinical nurse consultant, a paediatric physiotherapist, a paediatric research fellow, a paediatric nurse practitioner, a paediatric dermatology nurse practitioner and a paediatric burn clinical nurse consultant. All participants had experience relevant to the management of paediatric SJS/TEN.
To reduce bias, PDM and TL were not voting members, and data were assessed independently of voting members. Where consensus was not achieved, qualitative comments were reviewed to inform whether and how the guidance document should be amended.
The draft document was revised after review of clinician feedback and further review of the literature for areas of uncertainty or contention. Recommendation grades were assigned using the National Health and Medical Research Council (NHMRC) body of evidence matrix described in Table 1 [6]. The grades should be interpreted as a synthesis of available evidence, guideline recommendations and expert consensus for practical clinical guidance; they do not imply high‐quality trial evidence for every operational recommendation.
TABLE 1.
Definition of NHMRC grades of recommendations.
| Grade of recommendation | Description |
|---|---|
| A | Body of evidence can be trusted to guide practice |
| B | Body of evidence can be trusted to guide practice in most situations |
| C | Body of evidence provides some support for recommendation(s), but care should be taken in its application |
| D | Body of evidence is weak and recommendation must be applied with caution |
The final clinical guidance document is included as Supporting Information for this study (see Appendix S1).
2.1. Continuous Variables
Clinicians rated agreement using a 1–9 Likert scale, where 1 represented strong disagreement and 9 strong agreement. Statements covered patient history, examination, immediate management, inpatient care, discharge, follow‐up and monitoring of complications. Results were analysed descriptively. Positive consensus was prespecified as ≥ 80% of ratings in the agreement range (scores 7–9).
2.2. Categorical Variables
Clinicians were also asked to indicate whether specific inter‐unit referrals should be urgent and mandatory, prompt where clinically relevant, required at discharge, or not required. For investigations, clinicians indicated whether tests should be routine, reasonable but not routine, or not ordered. These data are presented descriptively, with the final guidance category after quantitative voting and clinical review reported. Where the final guidance category differed from the combined statistical mode, this is indicated in the Tables 2 and 3.
TABLE 2.
Inter‐unit referrals.
| Where there is clinical suspicion for SJS/TEN following history and examination, should referrals be made to the following team? | Group A score (n) | Group B score (n) | Groups A and B score (n) | Statistical mode | Final guidance category after quantitative voting and clinical review |
|---|---|---|---|---|---|
| Dermatology | 4 (16) 3 (2) | 4 (9) | 4 (25) 3 (2) | 4 | 4 |
| Burns | 4 (16) 3 (2) | 4 (6) 3 (3) | 4 (22) 3 (5) | 4 | 4 |
| Ophthalmology | 4 (9) 3 (8) | 4 (9) | 4 (18) 3 (8) | 4 | 4 |
| Intensive care unit | 4 (9) 3 (7) | 4 (2) 3 (7) | 4 (11) 3 (14) | 3 | 3 |
| Pain | 4 (6) 3 (9) | 4 (8) 3 (1) | 4 (14) 3 (10) | 4 | 4 |
| Urology/gynaecology | 4 (5) 3 (10) | 4 (4) 3 (5) | 4 (9) 3 (15) | 3 | 3 |
| Infectious diseases | 4 (2) 3 (8) 2 (1) 1 (3) | 3 (9) | 4 (2) 3 (17) 2 (1) 1 (3) | 3 | 3 |
| Otorhinolaryngology | 4 (3) 3 (8) 2 (1) 1 (2) | 4 (1) 3 (7) 1 (1) | 4 (4) 3 (15) 2 (1) 1 (2) | 3 | 3 |
| Respiratory | 3 (10) 2 (1) 1 (2) | 4 (1) 3 (6) 2 (1) 1 (1) | 4 (1) 3 (16) 2 (2) 1 (3) | 3 | 3 |
| Dietetics | 4 (3) 3 (12) | 4 (4) 3 (5) | 4 (7) 3 (17) | 3 | 3 |
| Physiotherapy | 4 (4) 3 (10) 1 (1) | 4 (1) 3 (5) 2 (2) 1 (1) | 4 (5) 3 (15) 2 (2) 1 (2) | 3 | |
| Social work | 4 (1) 3 (11) 2 (2) 1 (1) | 4 (1) 3 (5) 2 (2) 1 (1) | 4 (2) 3 (16) 2 (4) 1 (2) | 3 | 3 |
| Occupational therapy | 3 (12) 2 (3) | 4 (3) 3 (1) 2 (3) 1 (1) | 4 (3) 3 (13) 2 (6) 1 (1) | 3 | 3 |
| Psychology | 4 (1) 3 (10) 2 (4) | 4 (2) 3 (6) 2 (1) | 4 (3) 3 (16) 2 (5) | 3 | 3 |
| Clinical pharmacology/adverse drug reactions team | 4 (4) 3 (9) 2 (1) 1 (1) | 4 (1) 3 (6) | 4 (5) 3 (15) 2 (1) 1 (1) | 3 | 3 |
| Rehabilitation service (if substantial length of stay or deconditioning) | 4 (3) 3 (10) 2 (1) 1 (1) | 4 (2) 2 (3) | 4 (5) 3 (10) 2 (4) 1 (1) | 3 | 3 |
Note: Scoring: 1 = no referral; 2 = referral at discharge; 3 = prompt referral where relevant based on suspicion of system involvement; 4 = urgent and mandatory referral. The final guidance category reflects quantitative voting and subsequent clinical review. Denominators vary because participants were asked not to score items outside their scope or experience.
TABLE 3.
Initial investigations.
| Investigation | Group A score (n) | Group B score (n) | Groups A and B score (n) | Statistical mode | Final guidance category after quantitative voting and clinical review |
|---|---|---|---|---|---|
| Blood tests | |||||
| FBE | 3 (15) | 3 (9) | 3 (24) | 3 | 3 |
| UEC | 3 (15) | 3 (9) | 3 (24) | 3 | 3 |
| LFTs | 3 (14) 2 (1) | 3 (9) | 3 (23) 2 (1) | 3 | 3 |
| Glucose (not fasting) | 3 (12) 2 (2) 1 (1) | 3 (8) 2 (1) | 3 (20) 2 (3) 1 (1) | 3 | 3 |
| Ca/Mg/PO4 | 3 (10) 2 (3) 1 (1) | 3 (9) | 3 (19) 2 (3) 1 (1) | 3 | 3 |
| Coagulation studies | 3 (8) 2 (6) 1 (1) | 3 (7) 2 (1) 1 (1) | 3 (15) 2 (7) 1 (2) | 3 | 3 |
| ESR | 3 (9) 2 (2) 1 (2) | 3 (6) 2 (2) 1 (1) | 3 (15) 2 (4) 1 (3) | 3 | 3 |
| CRP | 3 (10) 2 (3) 1 (1) | 3 (6) 2 (3) | 3 (16) 2 (6) 1 (1) | 3 | 3 |
| beta‐hCG (in females, age‐dependent) | 3 (6) 2 (5) 1 (3) | 3 (6) 2 (3) | 3 (12) 2 (8) 1 (3) | 3 | 3 |
| ANA | 3 (5) 2 (4) 1 (2) | 3 (2) 2 (3) 1 (3) | 3 (7) 2 (7) 1 (5) | 2/3 | 2 |
| If ANA positive or lupus suspected: dsDNA, ENA and complement levels | 3 (5) 2 (4) 1 (2) | 3 (3) 2 (4) 1 (2) | 3 (8) 2 (8) 1 (4) | 2/3 | 2 |
| Anti‐skin antibodies (anti‐epithelial and anti‐basement membrane antibodies) | 3 (3) 2 (4) 1 (1) | 3 (2) 2 (3) 1 (4) | 3 (5) 2 (7) 1 (5) | 2 | 2 |
| Imaging | |||||
| Chest X‐ray | 3 (8) 2 (6) | 3 (7) 2 (2) | 3 (15) 2 (8) | 3 | 2 |
| Infectious disease screening | |||||
| Mycoplasma pneumoniae testing | 3 (10) 2 (1) 1 (2) | 3 (7) 2 (2) | 3 (17) 2 (3) 1 (2) | 3 | 2 |
| Chlamydia pneumoniae testing | 3 (5) 2 (8) 1 (1) | 3 (4) 2 (5) | 3 (9) 2 (13) 1 (1) | 2 | 2 |
| Skin swabs | 3 (8) 2 (6) | 3 (8) 2 (1) | 3 (16) 2 (7) | 3 | 2 |
| Oral mucosal swabs | 3 (6) 2 (6) | 3 (8) 2 (1) | 3 (14) 2 (7) | 3 | 2 |
| Conjunctival swabs | 3 (6) 2 (6) | 3 (5) 2 (4) | 3 (11) 2 (10) | 3 | 2 |
| Histology | |||||
| Histopathology (lesional skin at edge of blister with intact epidermis) | 3 (6) 2 (6) | 3 (6) 2 (3) | 3 (12) 2 (9) | 3 | 2 |
| Direct immunofluorescence (perilesional skin, if required to exclude immunobullous disease) | 3 (5) 2 (4) | 3 (3) 2 (5) 1 (1) | 3 (8) 2 (9) 1 (1) | 2 | 2 |
Note: Scoring: 1 = not ordered; 2 = reasonable but not routinely ordered; 3 = routinely ordered. The final guidance category reflects quantitative voting and subsequent clinical review. Where this differs from the combined statistical mode, the statistical mode is shown in parentheses within the final guidance category column. Denominators vary because participants were asked not to score items outside their scope or experience.
3. Results
Group A included 22 clinicians from a single paediatric tertiary referral centre. Group B included nine clinicians from eight other Australian and New Zealand tertiary referral centres.
3.1. History, Examination and Immediate Management
There was consensus for all statements relating to history, examination and immediate management in both Group A and Group B.
3.2. Unit Referrals
Categorical referral data are shown in Table 2. Dermatology, burns, ophthalmology and pain clinicians were assigned urgent and mandatory final guidance categories in the combined cohort. Intensive care, urology/gynaecology, infectious diseases, otorhinolaryngology, respiratory medicine, dietetics, physiotherapy, social work, occupational therapy, psychology, clinical pharmacology/adverse drug reactions and rehabilitation were generally scored as prompt referrals when clinically relevant.
3.3. Investigations
Categorical investigation data are shown in Table 3. Routine baseline blood tests were supported for full blood examination, urea/electrolytes/creatinine, liver function tests, glucose, calcium/magnesium/phosphate and inflammatory markers, coagulation studies with beta‐hCG where pregnancy is biologically possible and clinically appropriate.
Several investigations had a combined statistical mode of routine testing but were reclassified after clinical review as reasonable but not routine in the final guidance. These included selected infectious disease tests, chest X‐ray, specific swabs and histopathology. This refinement was made to avoid indiscriminate testing in mild, clinically stable or diagnostically typical presentations, while preserving access to targeted investigations where disease severity, diagnostic uncertainty, suspected differential or suspected infectious aetiology or secondary infection justified testing. Responses regarding ANA and related connective tissue disease‐related testing were mixed; the revised guidance therefore recommends these tests when bullous lupus or another autoimmune diagnosis is clinically plausible.
Anti‐skin antibody testing (anti‐epithelial and anti‐basement membrane antibodies) and direct immunofluorescence were considered reasonable rather than routine.
3.4. Inpatient Care and Ongoing Management
There was broad consensus for inpatient care and ongoing management statements, with one notable exception. The statement ‘SJS/TEN patients have a significantly lower fluid requirement when compared to burn patients’ had a mean (SD) of 4.64 (3.01) in Group A and 5.72 (2.07) in Group B. Qualitative comments indicated that fluid replacement should be individualised and guided by clinical assessment of volume status, urine output and relevant biochemical markers. This statement was amended in the guidance document.
3.5. Discharge and Follow‐Up
There was consensus for discharge and follow‐up statements in both Group A and Group B. The revised guidance emphasises written information for families, balanced advice about suspected culprit medications, consideration of medical alert identification, documentation and communication of drug adverse effects where relevant, dermatology follow‐up, ophthalmology follow‐up where ocular involvement occurred, and specialty follow‐up for sequelae according to clinical course.
4. Discussion
The novelty of this multidisciplinary consensus‐informed guidance is not the derivation of de novo evidence‐based recommendations, but the translation of existing evidence and guideline recommendations into a practical multidisciplinary tertiary‐paediatric workflow, with quantified assessment of agreement across specialties and sites.
The principal strength of this study is its multidisciplinary and multi‐site consultative approach. It does not seek to replace existing paediatric or adult SJS/TEN guidelines; instead, it identifies where practical implementation is consistent, variable or uncertain among participating clinicians and translates this into multidisciplinary consensus‐informed guidance.
The external consultation demonstrated that the core components of care were consistent across participating sites were as follows: Early recognition, withdrawal of potential causative medications, supportive care, multidisciplinary referral, careful skin and mucosal care, nutrition and discharge planning. These areas align with published SJS/TEN guidance and support use of the document as peer‐professional guidance in tertiary paediatric settings.
Several areas required revision after the consensus exercise. First, diagnostic precision is central to safe care. The revised guidance distinguishes SJS/TEN from staphylococcal scalded skin syndrome (SSSS), erythema multiforme, reactive infectious mucocutaneous eruption (RIME), Kawasaki disease, bullous lupus erythematosus and other autoimmune immunobullous diseases [7, 8, 9]. The document now specifies that investigations for autoimmune bullous diseases are not routine for typical SJS/TEN and should be considered when the clinical presentation, histology or direct immunofluorescence raises diagnostic uncertainty.
On review of the literature undertaking infectious disease investigations such as a chest X‐ray, Mycoplasma pneumoniae and Chlamydia pneumoniae serology have been provided with further clinical context in the guidance document, for example, when there are respiratory symptoms, suspected RIME or a need to establish a baseline in severe disease. Similarly, cutaneous, mucosal or conjunctival testing is provided with further context where there may be an infectious aetiology for SJS/TEN or in the context of secondary infection.
There was no consensus about using burn‐patient fluid requirements as a comparator. This is consistent with the limited evidence base for fluid replacement in SJS/TEN [10]. The revised guidance recommends individualised assessment of volume status, urine output and biochemical markers, rather than a fixed burns‐based formula.
Systemic immunomodulatory therapy remains uncertain. A 2022 Cochrane review found limited, generally low‐ or very‐low‐certainty evidence across systemic treatments [11]. Accordingly, when systemic therapy is considered, we recommend multidisciplinary discussion, case‐by‐case risk assessment and adherence to local approval criteria. Although the benefit of systemic immunomodulatory or immunosuppressive therapy remains uncertain, subsequent work has identified JAK/STAT signalling pathways as potential pathogenic drivers of SJS/TEN. Early reports of JAK/STAT inhibition have described improved outcomes; however, this approach remains investigational and should not be interpreted as established standard care [12, 13, 14, 15].
Wound‐care practice also remains an area of uncertainty. The guidance retains a conservative, low‐shear approach and provides locally relevant dressing examples, while acknowledging that specialist burn teams may consider biosynthetic skin substitutes and/or surgical approaches [16, 17, 18].
5. Limitations
This study describes clinician consensus and should not be interpreted as proof of comparative treatment effectiveness. Clinician opinions may be informed by experience, guidelines and published evidence, but they remain susceptible to specialty, institutional and resource‐related bias. The number of voting clinicians varied by item, particularly for categorical referral and investigation questions, because participants were asked not to score items outside their clinical scope. Results are therefore presented descriptively.
Participating hospitals differ in access to resources and personnel, including medical, allied health and nursing specialties. The guidance should therefore be adapted to local clinical governance, available services and patient factors. The document is best viewed as peer‐professional support for decision‐making, not as a rigid protocol.
6. Conclusion
Paediatric SJS/TEN care requires coordinated multidisciplinary assessment and management. This study demonstrates high agreement among clinicians from one tertiary paediatric centre and clinicians from eight other Australasian tertiary centres, while also identifying areas where evidence and practice remain uncertain. The multidisciplinary consensus‐informed guidance provides a practical reference to support consistent care, local adaptation and transparent multidisciplinary decision‐making.
Funding
The authors have nothing to report.
Ethics Statement
As discussed via e‐mail with the Editor‐in‐Chief, as this is a consensus study, ethics approval is not required.
Conflicts of Interest
The authors declare no conflicts of interest.
Supporting information
Appendix S1: Paediatric SJS/TEN Management Guidance.
Acknowledgements
Open access publishing facilitated by The University of Melbourne, as part of the Wiley ‐ The University of Melbourne agreement via the Council of Australasian University Librarians.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Appendix S1: Paediatric SJS/TEN Management Guidance.
Data Availability Statement
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.