Living with Parkinson's Disease: Priorities for Research Suggested by Patients

Schipper et al. (2014) full text summary PDF

For which topic were research priorities identified?

Parkinson's disease

In which location was the research priority setting conducted?

Europe - Netherlands

Why was it conducted at all?

A research agenda from the perspective of patients with PD was however missing. Members of the Dutch Patients' Association for Parkinson's Disease (PV) wanted to develop a research agenda from the perspectives of patients, as they were not sure whether existing research projects complied with the wishes and needs of patients.

What was the objective?

to list priorities for research of patients with Parkinson's disease to complement the professionals' research agenda

What was the outcome?

a list of 5 research areas

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

focus group; interview; survey

How were the priorities for research identified exactly?

Step 1: 27 interviews with patients, patients were asked what it was like to live with PD and what patients needed or what would help them to handle their situation, topic list was used to check if all relevant topics were discussed, topic list was based on literature review and exploratory interviews with stakeholders, to check validity participants received interpretation of their interview and were asked if they recognized it. Step 2: 4 focus groups: to validate and deepen interview data and its translation into research topics. Step 3: survey: patients were asked to rank topics and asked to rank the five domains

Which stakeholders took part?

Patients with Parkinson's Disease. Interviews: 27 participants. Focus groups: 30 participants. Survey: 1360 participants.

How were stakeholders recruited?

The research partners were selected from twelve patients and one spouse responding to a call of the PV. Five patients and one spouse were selected for a conversation on the basis of their CV/motivation letter. The PV distributed digital questionnaires to those members who had email, and 495 questionnaires randomly sent by post. Patients for the interviews and focus groups were recruited through articles in the patients' magazine, the PV website, an advertisement in Parkinson Plaza, and magazines for nurses and caregivers. The sampling was purposeful (selective). The questionnaire was sent digitally to all members of the PV. A random selection of patients, who did not have an email account, received the questionnaire by post.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of an advisory board. The advisory board consisted of 7 healthcare professionals and 6 patients. The advisory group came together three times and gave feedback and critically followed all activities of the research team.