New directions from the COMPASS study: A qualitative review of participation and communication in rural kidney health research.

BACKGROUND

The 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. As part of this study, we qualitatively explored participants’ opinions and motivations about CKD research participation, their health priorities and best practices for delivering lab results.

METHODS

This cross-sectional descriptive qualitative study was part of a larger longitudinal, epidemiological community-engaged mixed methods project. In COMPASS, participants were aged 18–80 years; lived in or near Cuba, New Mexico; and had up to seven study visits over five years, including receiving a kidney lab results letter using National Kidney Foundation 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 conducted qualitative coding from transcribed interviews using NVivo software.

RESULTS

We interviewed 33 adults of whom identified as 64% Hispanic, 24% American Indian, 55% female, 67% aged ≥ 50 years, 42% high school graduates, and 18% had at least an associate’s degree. Interviewees were positive about 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.

CONCLUSIONS

Community members in one rural New Mexico area embraced the opportunity to participate in kidney health research. Many participants made beneficial lifestyle changes and increased their understanding of kidney-related health issues. There is an unmet need to increase health literacy and enhance health education in rural areas.