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

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. © The Authors. Journal compilation © Mac Keith Press 2009.