Stroke Rehabilitation Delphi Study
- Project status: Active
Research area: Clinical Sciences > Neuroscience > Paediatric Stroke Research
A Delphi Study to establish consensus on an Australasian dataset for paediatric stroke rehabilitation
Stroke affects up to 400 Australian children per year, with reported incidence rates of 1.6 to 13 strokes per 100,000 children. Up to 14 per cent of children who experience a stroke die.
Children do not recover better than adults, with half of survivors having long term impairments, including cognitive, social, motor and language deficits.
Stroke affects up to 400 Australian children per year, with reported incidence rates of 1.6 to 13 strokes per 100,000 children. Up to 14 per cent of children who experience a stroke die.
Children do not recover better than adults, with half of...
Stroke affects up to 400 Australian children per year, with reported incidence rates of 1.6 to 13 strokes per 100,000 children. Up to 14 per cent of children who experience a stroke die.
Children do not recover better than adults, with half of survivors having long term impairments, including cognitive, social, motor and language deficits.
Overview
Rehabilitation is of critical importance in improving long term outcomes, but current evidence for sub-acute stroke care is low-quality and mainly extrapolated from adult stroke data.
This means that there is very limited evidence to guide the current rehabilitation practices used to help children recover from stroke. This impacts clinicians’ ability to provide accurate and meaningful prognostic counselling to families and provide timely, targeted and evidence-based interventions for children at appropriate ages and developmental stages.
Australasian Paediatric Stroke Rehabilitation Research Network (APSRRN)
Due to this lack of data, the Australasian Paediatric Stroke Rehabilitation Research Network (APSRRN) was established. The network brings together rehabilitation clinicians and researchers from across Australia and New Zealand (NZ) to generate better quality and higher-powered studies. The network’s overall objective is to develop a consistent approach for the collection of outcome data in the childhood stroke population, to enable aggregation into a multinational dataset.
Delphi Consensus study
We aim to conduct a Delphi Consensus study to reach a consensus about the most important outcomes to be measured following paediatric stroke, the most appropriate time points for evaluation, and the best assessment tools to measure them with.
This will form the platform for the development of future multi-site intervention studies and generate higher quality data from an Australian and NZ cohort, in order to better inform and support evidence-based approaches in paediatric stroke rehabilitation.
Study design
This is a three-stage study that will help us reach a consensus on outcomes, time points and assessment measures to inform the development of a multi-site, Australasian rehabilitation intervention trial.
Stage 1: Focus groups with parents and young people with lived experience of stroke
Parents and childhood stroke survivors were engaged to obtain information about the most important outcomes for clinicians to measure and track over time, from the acute phase through to the long-term rehabilitation stages following stroke.
Stage 2: Delphi Consensus surveys
Rehabilitation professionals across nine rehabilitation services in every state around Australia, as well as a site in New Zealand, were invited to reach a consensus on the most important outcomes for clinicians to measure, the most appropriate time points to measure these outcomes, and the best assessment tools to measure them. Three surveys were conducted to help us reach consensus.
Stage 3: Round table discussion and trial development
After the Delphi study is completed and the paediatric stroke rehabilitation dataset is confirmed, work will commence on the development and design of an early phase rehabilitation trial. The process will be as follows:
- Establishment of working groups, consisting of interdisciplinary clinician members of the APSRRN, the childhood stroke lived experience advisory group (LEAG), adult stroke rehabilitation and cerebral palsy trialists with expertise in design and successful conduct of RCTs.
- Review of the evidence for rehabilitation interventions in adult stroke and cerebral palsy trials to determine the feasibility and applicability to the childhood stroke population.
- Trial codesign with the APSRRN and LEAG, targeting functional domains of highest importance for families, and using an approach that is acceptable to clinician end users.
Research team
| Researcher | Organisation |
|---|---|
| Associate Professor Mark MacKay | Chief Principal Investigator, Director of the Murdoch Children's Research Institute Paediatric Stroke research program and Director of Neurology, The Royal Children's Hospital |
| Associate Professor Adam Scheinberg |
Principal Investigator, and Director of the Victorian Paediatric Rehabilitation Service, The Royal Children’s Hospital |
| Dr Frank Muscara | Principal Investigator, Murdoch Children's Research Institute, The Royal Children's Hospital |
| Associate Professor Sarah Knight | Principal Investigator, University of Melbourne |
| Dr Monica Cooper | Principal Investigator, The Royal Children's Hospital |
Funding and collaborators
The research team would like to thank the funders and the collaborating rehabilitation services and clinicians across Australia and New Zealand.
Collaborators:
Contact us
Neuroscience group
Murdoch Children's Research Institute
The Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Australia
Mark MacKay
Email: [email protected]
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