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

Dev Med Child Neurol. 2010 Mar;52(3):270-5. doi: 10.1111/j.1469-8749.2009.03358.x. Epub 2009 Aug 20.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Cerebral Palsy / physiopathology*
  • Consensus*
  • Delphi Technique
  • Humans
  • Professional-Patient Relations*
  • Research / standards*
  • Surveys and Questionnaires*