Prioritising Target Non-Pharmacological Interventions for Research in Parkinson's Disease: Achieving Consensus from Key Stakeholders

For which topic were research priorities identified?

Parkinson's disease

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

In 2014 Parkinson's UK conducted a research prioritization exercise with stakeholders highlighting important clinical research questions. The exercise highlighted the need for effective interventions to be developed and tested to tackle a range of non-motor symptoms including: sleep quality, stress and anxiety, mild cognitive impairment, dementia and urinary problems. The present work set out to build on this exercise by prioritising types of non-pharmacological interventions to be tested to treat the identified non-motor symptoms.

What was the objective?

to provide a comprehensive list of practical and acceptable non-drug treatments for non-motor symptoms of Parkinson's which can be used to push forward research to improve the lives of people with Parkinson's and their families

What was the outcome?

a ranking list of 15 research topics

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

Delphi; group discussion

How were the priorities for research identified exactly?

Step 1: identifying panel experts. Step 2: generating list of non-pharmacological interventions developed from literature review. Step 3: Delphi round 1: survey: participants were asked to rank the importance of each suggested non-pharmacological intervention for each of the non-motor symptoms identified as research priorities in the Parkinson's UK prioritization exercise. Step 4: group discussion: short presentation on the most prevalent non-motor symptoms, followed by suggestions for non-pharmacological interventions, followed by the ranking results of the first round survey, group discussed interventions and then prioritized interventions for research based on potential intervention efficacy, acceptability, need and translation into clinical practice. Step 5: Delphi round 2: survey: participants were asked to re-rank the interventions suggested for each non-motor symptom

Which stakeholders took part?

People with Parkinson's and health professionals (geriatrician, psychologists, PD nurses, physiotherapist, occupational therapist, speech therapist). Group discussion: 8 people with Parkinson's and 8 health professionals. Survey round 1: 19 participants (9 people with Parkinson's and 10 professionals working in Parkinson's). Survey round 2: 13 people with Parkinson's.

How were stakeholders recruited?

The health professionals, whose expertise was based on qualifications and proven track records in the field, were identified through peer consultation and invited via email by the authors. People with Parkinson's and carers were invited by Parkinson's UK through an email to their Research Network mailing list.

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.