A Delphi Study to establish consensus on an Australasian minimum dataset for paediatric stroke rehabilitation

Abstract

Background This study aimed to develop a consensus-derived minimum dataset (MDS) for childhood stroke to 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 comprising clinicians of varying rehabilitation disciplines, as well as families with lived experience, was established to oversee the modified Delphi process. Consultations 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 Delphi process was conducted, to reach consensus for an Australasian MDS for paediatric stroke rehabilitation. An advisory group comprising specialist rehabilitation clinicians from nine rehabilitation services across Australia and New Zealand responded to three surveys, which aimed to reach consensus on the key functional outcomes that are important to measure, the tools to measure these outcomes, and the timepoints for measurement. After each survey, the steering group collated and analysed 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 (COPM) 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 MDS represents an important advancement in paediatric stroke rehabilitation research. The current findings provide a foundation for transformative improvements in future research, and in the care of children recovering from stroke.