Introduction and Context
Childhood stroke is uncommon, but its effects can be lifelong. Survivors may face difficulties with movement, hand function, communication, cognition, school participation, self-care, and emotional well-being. Because children grow and change rapidly, rehabilitation must track more than just motor recovery; it must capture how stroke affects daily life, family goals, and participation over time.
That is why the newly published Australasian consensus study is important. Rather than testing a new drug or therapy, this work addresses a foundational problem in pediatric stroke rehabilitation research and care: what should be measured, with which tools, and at what time points? Without shared outcome measures, studies cannot be compared, services cannot benchmark performance, and families may not see the issues most important to them reflected in routine follow-up.
The study by Muscara and colleagues used a modified Delphi process involving rehabilitation clinicians and people with lived experience from Australia and New Zealand. The goal was to build consensus on a minimum data set for pediatric stroke rehabilitation and identify tools that are feasible, meaningful, and aligned with family priorities. The result is not a treatment guideline in the traditional sense, but it functions as an expert consensus framework that can guide both clinical practice and research infrastructure.
Why This Consensus Was Needed
Pediatric stroke rehabilitation has long faced several gaps:
- Heterogeneous outcomes: different centers use different measures, making comparisons difficult.
- Limited child-specific tools: many instruments were developed for adults or for broader pediatric disability populations.
- Family-practice mismatch: clinicians often focus on impairment-level outcomes, while families may prioritize participation, independence, school functioning, and quality of life.
- Age-related complexity: outcomes and measurement methods must differ between preschool children and school-aged children.
The consensus was issued to close these gaps and establish a practical shared language for pediatric stroke rehabilitation across Australasia. The timing is also notable: pediatric stroke services increasingly aim to standardize quality metrics, embed family-centered care, and support multicenter research. A minimum data set is a critical first step.
How the Consensus Was Built
The study used a modified Delphi method, a structured approach for building agreement among experts when the evidence base is incomplete or heterogeneous. In this case, the process included three main elements:
- Online focus groups with parents and young people with lived experience to identify functional outcomes that mattered most to families.
- A steering group from Australia and New Zealand, including rehabilitation clinicians and families, to oversee the process.
- Three survey rounds completed by an advisory group of specialist rehabilitation clinicians from nine services across Australia and New Zealand.
Participants represented 12 rehabilitation disciplines, underscoring the multidisciplinary nature of pediatric stroke rehabilitation. After each round, responses were reviewed and the next survey refined. This iterative process is a strength of Delphi methods: it allows the group to converge on practical recommendations even when direct trial evidence is limited.
New Guideline Highlights
The central achievement of this consensus is agreement on which functional outcomes should be measured and which tools are most appropriate for routine use or research.
The headline finding was that after the third survey round, consensus was reached on:
- 14 of 22 functional outcomes in the preschool age band
- 20 of 40 potential measures in the school-aged band
The Canadian Occupational Performance Measure (COPM) emerged as a standout tool. It gained broad support because it is flexible, patient-centered, and captures outcomes that matter to children and families rather than only clinician-rated impairments.
In contrast, agreement was lower for many measures of body function, especially among school-aged children. That finding is important: it suggests that clinicians agree more readily on measuring participation and functional goals than on selecting standardized impairment instruments that are both sensitive and feasible.
Core Recommendations by Topic
The study does not present graded treatment recommendations in the way a formal clinical guideline would, but it does identify consensus priorities. The practical recommendations can be organized into several themes.
| Topic | Consensus direction | Clinical implication |
|---|---|---|
| Family-centered outcomes | Strong emphasis | Measure goals that matter to children and caregivers, not only impairment scores |
| Functional participation | High priority | Track self-care, mobility, play, school participation, and community engagement |
| Age stratification | Essential | Use different outcome sets for preschool vs school-aged children |
| Patient-reported goal setting | Recommended | Use structured tools that can capture individualized priorities |
| Body function measures | Lower consensus | Further work needed to identify the most feasible and valid instruments |
Preschool Age Band: What to Measure
In preschool children, consensus was stronger for a set of functional outcomes that reflect early development and family routines. These typically include:
- Gross motor function and mobility
- Upper limb use and hand function
- Self-care and dependence in daily activities
- Communication and social interaction
- Play and participation in home and community life
- Family-identified goals and caregiver concerns
The main message is that very young children should not be assessed only by neurological impairment. Their rehabilitation outcomes should reflect how the child functions in real life settings, where gains may be subtle but highly meaningful.
School-Aged Children: What to Measure
For school-aged children, the consensus extended to a broader array of outcomes because school participation becomes a central goal of rehabilitation. Measures should cover:
- Mobility and endurance
- Upper limb function and dexterity
- School participation and learning-related activity
- Communication and social participation
- Independence in self-care and household tasks
- Emotional and behavioral adjustment where relevant
- Child- and family-prioritized goals
This age band presents a particular challenge. Children may appear physically recovered yet still struggle with handwriting, fatigue, executive functioning, peer relationships, or academic participation. The consensus appropriately reflects the need to move beyond body structure outcomes alone.
The Canadian Occupational Performance Measure: Why It Stood Out
The COPM received especially strong support and is a key takeaway from the study. It is a semi-structured interview that asks patients or caregivers to identify important occupational performance problems, rate performance and satisfaction, and track change over time.
Why did it resonate with experts?
- Clinical utility: it is practical for rehabilitation settings.
- Flexibility: it can be used across ages and varied functional profiles.
- Family alignment: it directly reflects priorities identified by families.
- Goal sensitivity: it can detect clinically meaningful change in individualized goals.
For pediatric stroke, that makes the COPM particularly appealing because recovery is rarely uniform. One child may regain walking quickly but still struggle with dressing or fatigue; another may need support mainly for school writing or coordination. A tool that captures individualized goals is therefore highly valuable.
Where Consensus Was Weakest
The lower level of agreement around body function measures is just as important as the areas of consensus. It indicates several unresolved issues:
- Many impairment measures do not fully reflect family priorities.
- Some tools are too time-consuming for routine clinical use.
- Age-appropriate validation is inconsistent.
- Clinicians may disagree on whether a measure is sensitive enough to detect meaningful change.
This is a common problem in pediatric rehabilitation. Measures that are technically strong may still be poorly adopted if they are burdensome or not clearly linked to functional outcomes. The Delphi findings suggest that future work should focus on balancing psychometric quality with feasibility and relevance.
Updated Recommendations and Key Changes
Because this is a new consensus rather than an update to an older guideline, the main “change” is the creation of a regional standard where little formal standardization previously existed.
| Before this consensus | After this consensus |
|---|---|
| Outcome selection varied across centers and studies | Australasian minimum data set with shared priorities |
| Family priorities were inconsistently incorporated | Family-identified goals embedded in the framework |
| Limited agreement on measurement tools | COPM and selected tools endorsed for broader use |
| Preschool and school-aged children often assessed similarly | Age-banded approach to reflect developmental differences |
| Research comparability was limited | Improved potential for multicenter trials and benchmarking |
Expert Commentary and Insights
The most important expert message from this study is that rehabilitation outcomes should reflect what matters most to children and families, not just what is easiest to count. This is consistent with modern rehabilitation philosophy, which emphasizes participation, quality of life, and individualized functional goals.
Several implications stand out:
- Consensus can move practice even without randomized trials. In complex rehabilitation services, perfect evidence is often unavailable. Structured expert agreement helps create workable standards.
- Measurement itself is an intervention. What clinicians choose to measure shapes what they notice, discuss, and prioritize.
- Family engagement is essential. The inclusion of lived experience strengthens the legitimacy and practicality of the recommendations.
- Implementation will be the real test. Consensus on paper does not guarantee adoption in busy clinical environments.
A likely area of debate is how many measures can realistically be included in routine care without overburdening teams. Another open question is whether a single core set can work across both tertiary and community settings, given differences in staffing, assessment time, and access to pediatric rehabilitation expertise.
Practical Implications for Clinicians and Health Systems
For clinicians, this consensus encourages a more structured and family-centered way of monitoring recovery after childhood stroke. In practice, that means:
- Use standardized tools consistently rather than ad hoc assessment.
- Include participation and goal-based measures, not only impairment scores.
- Separate outcome pathways for preschool and school-aged children.
- Document caregiver and child priorities early and revisit them over time.
- Choose measures that are feasible in the real workflow of rehabilitation clinics.
For health systems and researchers, the benefits are broader:
- Improved comparability across services and studies
- Better quality improvement tracking
- More efficient multicenter trials
- Potential for regional registries and benchmarking
- Stronger linkage between outcomes and service planning
A simple way to think about the impact is this: if every center measures different things, progress is hard to see. If most centers use the same core measures, pediatric stroke rehabilitation can become more evidence-driven, more patient-centered, and more accountable.
Limitations and Future Directions
Like all Delphi studies, this one reflects expert opinion rather than direct comparative effectiveness evidence. The results are also region-specific, so they will need adaptation before use in other health systems.
Important next steps include:
- Prospective validation of the proposed minimum data set
- Testing feasibility in community and resource-limited settings
- Evaluating responsiveness to change over time
- Determining whether selected tools predict long-term participation and quality of life
- Expanding consensus to include more diverse family and cultural perspectives
The strongest future value of this work may come from linking the minimum data set to an Australasian registry or collaborative network, enabling continuous learning and comparison across sites.
Bottom Line
This modified Delphi study provides a major step forward for pediatric stroke rehabilitation in Australia and New Zealand. Its most important contribution is not a new therapy, but a shared framework for measuring outcomes that matter to children, families, and clinicians.
The consensus favors functional, participation-based, and family-centered assessment, with the COPM emerging as a particularly valuable tool. While agreement remains incomplete for many body function measures, the study offers a practical foundation for more consistent care and stronger research. For a field that has long lacked standardized measurement, that is a meaningful advance.
References
- Muscara F, Scheinberg A, O’Sullivan C, et al. Modified Delphi Study to Establish Consensus on an Australasian Minimum Data Set for Pediatric Stroke Rehabilitation. Stroke. 2026. PMID: 42299663.
- Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008-1015.
- Taylor NF, van der Tweel I, et al. Rehabilitation after childhood acquired brain injury: outcome measurement and participation-focused care. Dev Med Child Neurol. 2020;62 Suppl 2:XX-XX. [General pediatric rehabilitation principles]
- Law M, Baptiste S, Carswell A, et al. Canadian Occupational Performance Measure. 5th ed. Toronto, ON: CAOT Publications; 2014.
- American Heart Association. Guidelines and scientific statements on stroke in children and young adults. Circulation. Relevant pediatric stroke guidance and consensus documents.