Abstract

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, NM. As part of this study, we qualitatively explored participants’ opinions about CKD research and best practices for delivering lab results to patients.

Methods This 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.

Results We 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.

Conclusions Community 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.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

The COMPASS Study is supported by grants from DCI & NCATS (UL1TR001449).

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The Human Research Review Committee (ethics committee/IRB) of the University of New Mexico Health Sciences Center gave ethical approval for this work.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data produced in the present study are available upon reasonable request to the authors.

AcronymsCKDChronic kidney diseaseCOMPASSCommunity Based Study of the Epidemiology of Chronic Kidney Disease in Cuba New Mexico and Surrounding AreasESKDEnd-stage kidney diseaseNKFNational Kidney FoundationNMNew Mexico