Research priority setting in kidney disease: a systematic review

Background: Resources for research are insufficient to cover all unanswered questions, and therefore difficult choices about allocation must be made. Recently there has been a move toward more patient-centered research. This study aims to evaluate approaches to research prioritization in kidney disease and describe research priorities of patients with kidney disease, their caregivers, the health care providers involved in their care, and policy makers.

Study design: Systematic review.

Setting & population: Studies that elicited patient, caregiver, health care provider, or policy maker priorities for research in kidney disease were included.

Search strategy & sources: MEDLINE, EMBASE, PsycINFO, and CINAHL were searched to May 2014.

Analytical approach: Descriptive synthesis.

Results: We identified 16 studies (n=2,365 participants) conducted in the United States, the Netherlands, Australia, Canada, and internationally. Only 4 (25%) studies explicitly involved patients. Various priority-setting methods were used, including the Delphi technique, expert panels, consensus conference, ranking or voting surveys, focus groups, and interviews, of which the process was described in detail by 11 (69%) studies. The priority areas for research most frequently identified across studies were prevention of acute kidney injury, prevention of chronic kidney disease progression, fluid and diet restrictions, improving vascular access, kidney transplant survival, access to transplantation, patient education, and psychosocial impact of chronic kidney disease.

Limitations: Most studies were conducted in high-income countries.

Conclusions: The priorities identified by kidney disease research priority-setting exercises are broad ranging, but patient involvement is uncommon and the processes often are incompletely described. Establishing research priorities using a prespecified and transparent process that engages patients, caregivers, and health care providers is needed to ensure that resources are invested to answer questions that address the shared priorities in kidney disease.