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

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.

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Journal
Stroke
Published
2026-06-16
DOI
https://doi.org/10.1161/strokeaha.125.054515
Primary Topic
Cerebral Palsy and Movement Disorders
Type
article
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article

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

Jodie Mazzucchelli, Misty Blakeman, Corinne Browne, Bronwyn Thomas et al.
Stroke
Cerebral Palsy and Movement Disorders
article

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

Jodie Mazzucchelli, Misty Blakeman, Corinne Browne, Bronwyn Thomas, Priya Edwards, Monica S. Cooper, Renae Dayman, A Urquart, Frank Muscara, Shani Jackman, Suzi Drevensek, K J French, Sarah Knight, Ray Russo, O D LLOYD, Maria Kyriagis, Lisa Edwards, Mark Thomas Mackay, Jessica Newham, Jamie Tse, Katie Banerjee, Jonson Moyle, Anna Gubbay, Grace Yee, Jayasri Srinivasan, Riley Moody, Jimmy Chong, Sam Armstrong, Adam M. Scheinberg, Kim McLennan, Martine Simons-Coghill, Gabrielle Brawn, Danielle Beston, Errolyn Boettcher-Hunt, Nicola Hilton, E. Greer Richardson, R W Starr, Adrienne Epps, Erin Lunn, Colin Dobson, AJ Clayton, Therese Clark, Rose Iannuzzelli, T P Keating, Timothy McGowan, Olivia Beattie, Divyagowri Manila, Jennifer Harben, Harriet Ferguson, Theresa Carroll, Natasha Lannin, Adrienne Harvey, Penelope Ingle, Gabrielle Eather, Emily Clay, Amy Shaw, Mardee Greenham, Anna Doyle, Robert L. Smith, Johnny Leung, Candice Brady, Jane Valentine, Julieanne Macey, Jenny Colegate, Megan Thorley, Liz Patton, Eliza Malony, Catherine O’Sullivan, Melanie Tozer, Kimberley Copeland, Jessie Newton, Peter Clissa, Anna Ward, Susan Ong, Melina Argyle, Cynthia Chong, Debbie Houston, Deborah Stamatiou, Christina Miteff, Jo Rimmer, Andree Innes, Christina Sprott, Kirsten Larven, Peter Kilby, Karen M. Barlow, Daphne Su, April Sutcliffe
article en

Abstract

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.

Stroke
Royal Children's Hospital (AU), Royal Women's Hospital (AU), The University of Melbourne (AU), Flinders University (AU), The Kids Research Institute Australia (AU), Princess Margaret Hospital for Children (AU), Women's and Children's Hospital (AU), Children's Hospital at Westmead (AU), Royal Hobart Hospital (AU), Health Promotion Agency (NZ), Sydney Children's Hospital (AU), John Hunter Children's Hospital (AU), Sydney Children’s Hospitals Network (AU), Murdoch Children's Research Institute (AU), Children's Health Queensland Hospital and Health Service (AU), Australian Psychological Society (AU)
Openalex Percentile: Top 7%
Cerebral Palsy and Movement Disorders
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