Consensus Research Priorities for Cerebral Palsy: A Delphi Survey of Consumers, Researchers, and Clinicians

McIntyre et al. (2010) full text summary PDF

For which topic were research priorities identified?

cerebral palsy

In which location was the research priority setting conducted?

Australia - Australia

Why was it conducted at all?

Cerebral palsy (CP) is the most common physical disability in childhood. Despite clinical and research advances, its incidence remains stable. The condition is lifelong with no known cure. There is a need for research in aetiology, prevention, and effective intervention for maximizing potential and optimizing quality of life. no evidence exists of explicit published prioritization for CP research that is itself developed through a scientific process. Many individual research questions are identified at the conclusion of studies. However, no published study could be identified that provides guidance on the relative importance and ranking of the questions or where best to direct limited research funds to drive the field forward. The World Health Organization has identified that a collaborative, widely consulted, systematic approach to research priority setting is essential. Thus, establishing a unified research agenda for CP and consensus on essential and urgent research topics may provide the possibility of accelerating breakthroughs.

What was the objective?

to identify questions for future research that were agreed to be a high priority

What was the outcome?

a ranking list of 56 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

Delphi

How were the priorities for research identified exactly?

Step 1: literature review to identify research questions. Step 2: Delphi round 1: participants were asked to identify 3 areas that need to be researched for cerebral palsy. Step 3: thematic analysis: identified research areas reviewed, initial 822 responses reduced to 290 mutually exclusive research areas. Step 4: Delphi round 2: participants were asked to rate the questions, all questions with median of 6 or more with an interquartile range of 1 or less were considered to have reached high priority and placed on priority list. Step 5: Delphi round 3: list with only questions that were priority but had not yet reached consensus, participants were asked to rate these questions

Which stakeholders took part?

Consumers, researchers, and clinicians. Delphi round 1: 127 participants: 20 consumers, 76 intervention researchers/clinicians, 31 aetiology/prevention researchers. Delphi round 2: 84 participants: 20 consumers, 45 intervention researchers/clinicians, 19 aetiology/prevention researchers. Delphi round 3: 69 participants: 19 consumers, 32 intervention researchers/clinicians, 18 aetiology/prevention researchers.

How were stakeholders recruited?

Participants were recruited through purposive sampling. (1) Consumers who had attended research information sessions provided by the first author over the preceding year, or who had made an enquiry to the research team, were approached. (2) Potential participants for the intervention survey were identified as those who had multiple publications in CP research or who were clinicians in positions of leadership throughout Australia. (3) Potential participants for the aetiology/prevention survey were identified as those who had multiple publications in CP aetiology/prevention research.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.