Coping, Family and Mastery: Top Priorities for Social Science Research by Patients with Chronic Kidney Disease

For which topic were research priorities identified?

chronic kidney disease

In which location was the research priority setting conducted?

Europe - Netherlands

Why was it conducted at all?

The value of incorporating patients' perspectives in health care is being acknowledged more and more because such incorporation may improve quality of health care. However, research priorities are mostly driven by professionals.

What was the objective?

to list priorities for social scientific research of renal patients in order to complement the professionals' research agenda on kidney diseases

What was the outcome?

a list of 3 research topics

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

focus group; interview

How were the priorities for research identified exactly?

Step 1: interviews and focus groups: 20 semi-structured interviews and 7 focus groups, topic list based on literature review and adjusted after three pilot interviews, participants were asked to rank the research topics from most important topic to least important, individual rankings were then discussed by participants

Which stakeholders took part?

Researchers, renal patients. Interviews: 20 participants: 10 patients. Focus group: 54 patients.

How were stakeholders recruited?

Patients were eligible to participate if they were able to speak Dutch, 18-80 years and able to give informed consent. All were on dialysis treatment or had a kidney transplant. Participants were recruited by the patient organization.

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.