Article Text

Priority setting partnership to identify the top 10 research priorities for the management of Parkinson's disease
  1. Katherine H O Deane1,
  2. Helen Flaherty1,
  3. David J Daley1,
  4. Roland Pascoe1,
  5. Bridget Penhale1,
  6. Carl E Clarke2,3,
  7. Catherine Sackley4,
  8. Stacey Storey5
  1. 1School of Health Sciences, University of East Anglia, Norwich, UK
  2. 2School of Clinical and Experimental Medicine, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
  3. 3Department of Neurology, Sandwell and West Birmingham Hospitals NHS Trust, City Hospital, Birmingham, UK
  4. 4Kings College, London, UK
  5. 5Parkinson's UK, London, UK
  1. Correspondence to Dr Katherine HO Deane; k.deane{at}uea.ac.uk

Abstract

Objectives This priority setting partnership was commissioned by Parkinson's UK to encourage people with direct and personal experience of the condition to work together to identify and prioritise the top 10 evidential uncertainties that impact on everyday clinical practice for the management of Parkinson's disease (PD).

Setting The UK.

Participants Anyone with experience of PD including: people with Parkinson's (PwP), carers, family and friends, healthcare and social care professionals. Non-clinical researchers and employees of pharmaceutical or medical devices companies were excluded. 1000 participants (60% PwP) provided ideas on research uncertainties, 475 (72% PwP) initially prioritised them and 27 (37% PwP) stakeholders agreed a final top 10.

Methods Using a modified nominal group technique, participants were surveyed to identify what issues for the management of PD needed research. Unique research questions unanswered by current evidence were identified and participants were asked to identify their top 10 research priorities from this list. The top 26 uncertainties were presented to a consensus meeting with key stakeholders to agree the top 10 research priorities.

Results 1000 participants provided 4100 responses, which contained 94 unique unanswered research questions that were initially prioritised by 475 participants. A consensus meeting with 27 stakeholders agreed the top 10 research priorities. The overarching research aspiration was an effective cure for PD. The top 10 research priorities for PD management included the need to address motor symptoms (balance and falls, and fine motor control), non-motor symptoms (sleep and urinary dysfunction), mental health issues (stress and anxiety, dementia and mild cognitive impairments), side effects of medications (dyskinesia) and the need to develop interventions specific to the phenotypes of PD and better monitoring methods.

Conclusions These research priorities identify crucial gaps in the existing evidence to address everyday practicalities in the management of the complexities of PD.

  • Research priorities
  • Priority setting partnership
  • Disease management

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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