This project is one of the first attempts to systematically assess priorities for CER studies among stakeholders in the CKD community. Stakeholders’ high priority rankings reflect topics posing significant burden to patients with CKD or at risk of CKD, and aspects of CKD care for which there is significant uncertainty regarding effectiveness. High rankings also reflect stakeholders’ views that high-quality systematic reviews could help inform clinical practice or policy. While topics identified through this process may not include all topics that warrant CER systematic reviews or primary CER studies, this process may provide a preliminary road map for researchers seeking to perform CER studies relevant to the CKD community.
Many topics receiving a ‘high priority’ designation by stakeholders focused on studying the effectiveness of strategies to prevent CKD incidence and to slow CKD progression. Some highly ranked topic areas, such as ‘patient safety’, were reflected in multiple domains of the conceptual map. Because they are viewed as relevant to several aspects of CKD care and prevention, rigorous CER reviews on these topics could have high impact on patient care and clinical outcomes. Other topics, such as studies evaluating the comparative effectiveness of health information technology and the study of collaborative care strategies (both ranked as ‘top tier’ by our stakeholders), represent novel areas of inquiry. We identified few studies of these topics during our feasibility assessment, potentially reflecting a potential need for primary CER studies in these areas.
There are several caveats to our engagement of stakeholders for their input. First, the group of stakeholders was relatively small. Thus, individual stakeholders’ rankings could substantially affect topics’ overall final rankings and might not reflect fully the range of opinions that might be present among the entire CKD community. Indeed, some stakeholders did express concerns regarding the appropriateness of some topics for CER reviews, given a paucity of evidence to address these topics. Second, the composition of our stakeholder group and the manner in which we contacted stakeholders for participation in this exercise could also affect our findings. Third, while our stakeholder group included representatives from two patient advocacy organizations, we did not include actual patients with CKD. Methods for selecting patients with appropriate levels of expertise (i.e., medical knowledge, awareness of issues affecting patients with CKD relevant to comparative effectiveness research) for this type of scientific effort are not yet well defined. Fourth, stakeholders’ input may also have been further enriched by our inclusion of non-physician medical professionals such as nurses, social workers and dietitians. Future efforts to identify topics for CER reviews should consider broadening stakeholder representation to include patients and non-physician medical professionals. Fifth, some stakeholders did submit additional comments in with their rankings, which provided additional context to their rankings. However, because all stakeholders did not comment to the same extent, we did not formally analyze these comments. Finally, as this was one of the first funded efforts to identify priorities for CER systematic reviews in CKD, diversity in stakeholders’ opinions could also reflect their varying interpretations of the ultimate goal of activities such as this.
Other characteristics of our approach could also have influenced our findings. For instance, we developed the map and topic lists via iterative discussions prior to obtaining stakeholders’ input, and without regard to ongoing systematic reviews, which may have influenced the range of the final list of topics that the stakeholders ranked. Future projects of this kind may benefit from assessing and comparing independently determined priorities of different groups of stakeholders, including policy makers, funding agencies, clinicians and patients. Also, while our preliminary findings suggest several topics may have enough evidence to make CER systematic reviews feasible, several factors determine whether a systematic review will add value to inform medical decision-makers, including the number and quality of studies available to review, how definitively identified studies answer the question of interest, and how answers to questions will reduce uncertainty or add to the current knowledge and ultimately impact care. These factors should all be considered prior to undertaking CER systematic reviews.
In conclusion, we systematically identified priorities for CER research relevant to the care of patients with Stages I-IV CKD among stakeholders in the CKD community. Future efforts such as ours might benefit from identification of an even more broadly defined group of stakeholders (e.g., patients and non-physician CKD health professionals), further refinement of protocols for engaging stakeholders throughout the topic identification process, and development of strategies for identifying areas in need of both CER systematic reviews as well as primary CER studies. Findings from this project may be a useful guide for researchers and research funders seeking to address CER questions highly relevant to improving clinical care and outcomes of patients with CKD.