Consensus research priorities for cerebral palsy: a Delphi survey of consumers, researchers, and clinicians

Authors


  • ACKNOWLEDGEMENTS
    This study was funded solely by in-kind contributions of staff salary time from the Cerebral Palsy Institute, which is supported by the Cerebral Palsy Foundation. We thank all the consumers, researchers, and clinicians who participated in this study. We particularly thank Shona Goldsmith from the Cerebral Palsy Institute for her editing and formatting, and Jessica Porter during data collection.

  • Correction added after online publication on 2 October 2009: 1) the citation of Table I on page1 has been changed to Table SI; 2) Table I has been moved to page 5.

Sarah McIntyre at Cerebral Palsy Institute, PO Box 184, Brookvale, Sydney, New South Wales 2100, Australia. E-mail: smcintyre@tscnsw.org.au

Abstract

Aim  Research funds for cerebral palsy are scarce and competition for them is strong. This study aimed to identify questions for future research that were agreed to be a high priority.

Method  An expert panel of consumers, researchers, and clinicians was assembled (n=127) and surveyed using a Delphi survey comprising three rounds. In round I, participants identified three important research topics. Three parallel surveys were constructed: (1) consumers; (2) intervention researchers and clinicians; and (3) aetiology and prevention researchers. In rounds II and III, participants rated priorities using a seven-point Likert scale. Questions reaching consensus were itemized and those not reaching consensus were discarded.

Results  Consumers identified questions in the themes of prevention/cure, quality of life/community participation, and service provision/intervention. Intervention researchers/clinicians identified questions in the themes of effective outcomes and effective research/services. Aetiology and prevention researchers identified questions in the themes of infection/inflammation, focus on timing, haematology, research tools, neuroregeneration, and genetics. Fifty per cent of the consumers’ priorities were also identified by professionals.

Interpretation  Research priorities change as evidence is established. Phase II of this project is to develop a web portal with international collaboration. As evidence builds for one research question, it will be added to the web portal and unanswered questions will become the priority.

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