Modified Delphi Study to Establish Consensus on an Australasian Minimum Data Set for Pediatric Stroke Rehabilitation

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BACKGROUND: This study aimed to develop a consensus-derived minimum data set for childhood stroke and establish an agreed set of tools to measure key functional outcomes identified as important by childhood stroke survivors and their families. METHODS: A steering group from Australia and New Zealand comprising rehabilitation clinicians and families with lived experience was established to oversee the modified Delphi process. Online focus groups with parents and young people with lived experience determined key functional outcomes of importance to families throughout rehabilitation. Based on this information, a prospective survey-based modified Delphi process was conducted to reach consensus for an Australasian minimum data set for pediatric stroke rehabilitation. An advisory group comprising specialist rehabilitation clinicians from 9 rehabilitation services across Australia and New Zealand responded to 3 surveys, which aimed to reach consensus on the key functional outcomes that are important to measure, the tools to measure these outcomes, and the time points for measurement. After each survey, the steering group collated and analyzed the data, and confirmed the content of subsequent surveys. RESULTS: Seventy-three participants from 12 rehabilitation disciplines participated. After Survey 3, consensus was reached on the measures for 14 (64%) of 22 functional outcomes in the preschool age band, and 20 (50%) of the 40 potential measures in the school-aged band. The Canadian Occupational Performance Measure was identified as a particularly valuable tool, achieving broad consensus due to its clinical utility, flexibility, and alignment with outcomes of importance to families and clinicians. Agreement on tools to measure other functional outcomes, particularly body function outcomes, reached lower levels of consensus. CONCLUSIONS: The agreement on the best measurement tools to be included in a minimum data set represents an important advancement in pediatric stroke rehabilitation research. The current findings provide a foundation for transformative improvements in future research, and in the care of children recovering from stroke.