New Directions from the COMPASS Study: Participation and Communication in Rural Health Research

BackgroundThe Community Based Study of the Epidemiology of Chronic Kidney Disease in Cuba New Mexico and Surrounding Areas (COMPASS) was designed to screen for chronic kidney disease (CKD) and discover novel related biomarkers in rural New Mexico, NM. As part of this study, we qualitatively explored participants opinions about CKD research and best practices for delivering lab results to patients. MethodsThis cross-sectional descriptive qualitative study was part of a larger longitudinal, epidemiological community-based mixed methods project. In COMPASS, participants were aged 18-80 years; lived in or near Cuba, NM; and had up to seven study visits over five years, including receiving a kidney lab results letter using National Kidney Foundation (NKF) visualization tools. All participants were invited to participate in an interview after one year, the focus of the current manuscript. We asked them about their thoughts of research participation and solicited feedback on the results letter. Using a team-based, iterative process, we elicited themes from transcribed interviews using NVivo software. ResultsWe interviewed 33 adults of whom were 64% Hispanic, 24% American Indian, 55% female, 67% aged [≥]50 years, and 42% high school graduates. Interviewees were positive toward participating in kidney health research; they appreciated the results letter, but most said they needed help interpreting and/or had suggestions for improvement. Many made positive lifestyle changes. ConclusionsCommunity members in one rural NM area embraced the opportunity to participate in kidney health research. The NKF visualization tools were well-received and inspired positive lifestyle change, but results should be written in plain language. The letter demonstrates the potential efficacy of such interventions to improve understanding and care of medical conditions but also illustrates the opportunity to improve the effectiveness of this type of communication.