Setting Research Priorities for Patients on or Nearing Dialysis

Discussion

Using an established method (9), we identified the top 10 research uncertainties from the perspective of patients living with severe kidney disease, their caregivers, and the health professionals that care for them. These include questions ranging from the causes and optimal management of patient-relevant symptoms, the most appropriate dialysis modality for each patient, cardiovascular health, ways to increase access to transplantation, the best method of communication with patients and families, how to address the psychological and social needs of patients, the effect of dietary restrictions, and the optimal hemodialysis access. Although it is difficult to compare these priorities to the current research being conducted in the field, these uncertainties appear to focus more on improving symptoms and optimizing communication, and less on determining how to extend life.

From the survey results, we noted differences among the priorities identified by patients, caregivers, physicians, and nurses, particularly with regard to symptoms. While we did not specifically seek priorities from researchers, the priorities we identified have some overlap with those identified by the Kidney Research National Dialogue (KRND), which was sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases (4). The objectives for the KRND dialysis therapies subgroup, which included 10 experts in dialysis and research into dialysis therapies, was to identify broad themes to help focus the research agenda for dialysis therapies (5). The themes identified by this conference included some topics that were similar to the priorities we identified, including “Decreasing Cardiovascular Risk in Dialysis Patients,” “Improving Vascular Access Outcomes,” and “Innovative Approaches to Reduce the Burden of Hemodialysis Treatments” as well as a broad focus on “Enhancing Patient-Centered Outcomes.” However, it also included themes that were not identified as priorities within our work, including “Identifying Uremic Toxins and Optimizing Their Clearance” and “Optimizing the Composition of Dialysate.”

We are aware of two other studies that have incorporated patient input regarding research priorities for people with severe kidney disease undergoing dialysis (6,8), although one only considered priorities to inform a social science research agenda for patients with kidney failure (8). Although the study by Tong et al. incorporated the views of patients, in general, the research priorities identified were broad compared with the research uncertainties identified by our process. Moreover, while research priorities of patients have been collected for other clinical areas, including diabetes, eczema, eye disease, and prostate cancer (12–14), we are not aware of any studies that have compared the priorities of patients, caregivers, and health care professionals.

Consistent with the study by Tong et al. (6), we found that many uncertainties submitted by patients in our survey touched on the optimal way to prevent or manage earlier forms of CKD and thus avoid the need for dialysis. These questions, while clearly important to patients and caregivers, were beyond the scope of this current project and will be considered in a future research priority–setting partnership for patients with earlier stages of kidney disease.

Our study has strengths and limitations. We conducted a national survey and applied a transparent method routinely used and successfully applied by other groups (9), which ensured that different perspectives could be incorporated. While it might be seen as a limitation that we did not exclusively consider priorities from patients alone, the James Lind Alliance uses a shared process for identifying research priorities, including patients, caregivers, and clinicians throughout the priority-setting exercise with the expectation that this will increase the support for the priorities identified, across all groups, in comparison to an exercise including each group separately. Although we have identified important priorities for research, we acknowledge that there is no gold standard for identifying research priorities and that the final priority-setting workshop exercise includes participants’ subjective viewpoints; however, the use of experienced facilitators and an established process reduced this impact. Efforts were made to survey as many patients, caregivers, and health care professionals across Canada as possible, but our responses may not be entirely representative of all patient groups (including the frail elderly, Aboriginal people, African Canadian people, and Francophone Canadians). In addition, there were only 317 respondents. Nonetheless, the average age of respondents was similar to the average age of patients starting dialysis, and with >1500 uncertainties identified we had a comprehensive list from which to prioritize.

We believe that the priority-setting process that we used gave us a robust set of research questions that researchers can address over the coming years. While we do not feel that these top 10 research uncertainties should be the sole driver of the research agenda, we do believe they should receive careful consideration by funders and researchers alike. Many (if not all) of the questions could be answered with carefully designed randomized clinical trials, with the need for basic discovery research, and mixed-methods research in some cases as well. Given that nephrology is the medical specialty with the fewest trials to guide management (15), health care funders are encouraged to offer targeted funding competitions for the questions of highest priority and to encourage researchers to use these priorities when developing their own research agendas. With the increasing emphasis on patient-centered care in the United States and elsewhere, the importance of including patients and their caregivers in establishing research priorities that inform clinical care is clear (16–18). However, identifying the best approach to engage patients and get their feedback has been a challenge for health care organizations and for funders (18).

Through a comprehensive process involving patients, caregivers, and a multidisciplinary group of health care professionals, we have assembled the top 10 priorities for new research questions relevant to patients receiving or nearing dialysis. These can be used alongside the results of other research priority–setting exercises to guide researchers in designing research studies, including justifying the importance of research questions, and can inform health care funders.