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

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. 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.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12882-025-04721-z.

Background

Chronic Kidney Disease (CKD) is a frequently unrecognized health condition associated with various comorbidities. When end-stage kidney disease (ESKD) develops, many patients consider the initiation of kidney replacement therapy. The impact of CKD in the United States assumes a disproportionate importance in rural areas with CKD related, age-adjusted mortality rates reported higher in rural areas compared to urban [1, 2]. While unique socioeconomic factors and limited access to both primary and specialist care play a considerable role in the disproportionate impact of CKD [1, 3, 4], additional studies are warranted to understand more about these higher rates of CKD burden in rural areas. Such programs will fulfill a secondary role: uncovering CKD or risk factors in study participants leading to therapeutic interventions slowing the rate of CKD progression and delay onset of dialysis, which are difficult to implement in rural areas [5].

It is increasingly recognized that clinical practice and patient health outcomes can benefit significantly from research participation by healthcare providers and their patients [6]. However, practicing in rural areas pose challenges to engage in research including lack of time or interest due to work overload and disruption of workflow [7]. Meanwhile, researchers also face numerous challenges when striving for community engagement in research, such as understanding best practices of community-engaged research, the community’s culture, language, socioeconomics, structure/politics, potential mistrust toward research or medicine, and more [8–12]. Regardless, community engagement is important to build trust and improve clinical and research outcomes.

New Mexico (NM) is unique in many ways: it has a rich culture with more than half its population being Hispanic or Native American; it is the fifth largest state in landmass, and approximately half of its population lives in rural areas [13, 14]. NM has one of the highest rates of diabetes and ESKD in the US and has other challenges of provider shortages, poverty, and transportation, particularly in rural areas [13, 15–17]. Additionally, residents across rural NM have had few opportunities to participate in clinical or epidemiological studies of CKD. While these unique circumstances may be seen as strengths for research opportunities, it requires a special skillset of investigators for strong community engagement and identifying ways to address these barriers of obtaining healthcare and participation in clinical research.

To better understand whether our approach to community research was appropriate for the challenges in our area, we surveyed the participants in the study, Community Based Study of the Epidemiology of Chronic Kidney Disease in Cuba NM and Surrounding Areas (COMPASS) [4, 15]. This project was designed as a community-engaged kidney health screening and translational biomarker research program. An important secondary aim, and the focus of this manuscript, was to explore participants’ perspectives, motivations, and health priorities related to CKD research participation and best practices for delivering kidney lab results to patients through qualitative interviews.

Our emphasis on the delivery of lab test results to -- and the understanding of the results from -- participants stems from the complexity of terminology, abbreviations, and the numerical nature and temporal evolution of the two primary tests of kidney (filtration) function (eGFR: estimated glomerular filtration rate) and kidney damage (urine albumin to creatinine ratio). In the US, both the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) and the National Kidney Foundation (NKF) have promoted a visual tool to explain these tests for clinical use [18], but the tool has not been evaluated for effectiveness in communicating the presence of kidney disease. Considering the poor awareness of CKD in rural versus urban non-US populations [19–21], we felt it was important to document the understanding of kidney testing among participants in one rural NM community by explicitly asking about the utility of the proposed clinical tool by the NIDDK and the NKF [18].

Methods

This cross-sectional, descriptive, qualitative study was part of a larger, longitudinal, epidemiological community-engaged mixed methods project, COMPASS. The rationale and the design of the study have been previously described [5]. In sum, eligible participants were 18 to 80 years of age and a mailing address within 20 miles of the rural town of Cuba, NM. Patients were ineligible if they had a history of renal replacement therapy (dialysis or transplantation). We chose the location because Cuba is a regional hub that provides essential government functions for a vast geographic area along a major state highway (US-550). It is also one of the most diverse residential areas in NM and in the US (diversity index of 85/100 versus national average of 60/100), with 36.5% of families and 41.3% of the population below the poverty line [14]. Another important factor was that diabetic ESKD is highly prevalent in the state of NM and in this community [17].

In the parent study, participants had up to seven study visits over five years that included questionnaires, clinical examinations, and blood and urine samples. They received a kidney lab results letter using the National Kidney Foundation visualization tools available at the time of study design (Fig. 1) [18], and a follow-up letter with incidental lab results needing attention. All participants were invited to participate in an interview after their one-year visit (purposive sample), which is the focus of the current manuscript.

Fig. 1.

Example kidney lab results letter. This is an example kidney lab results letter template using National Kidney Foundation visualization tools [18] for someone who has low GFR and high albumin. Letters also included contact information for the study principal investigator

This study was approved by the University of New Mexico Human Research Review Committee (HRRC #15–575). The research team was made up of nephrologists, kidney researchers, and content experts (CPA, MER, LM, DWS) at the University of New Mexico’s Division of Nephrology and community engagement and qualitative researchers (HRB, JEF) at the University of New Mexico’s Southwest Center for Advancing Clinical and Translational Innovation.

The goal of our interviews was to understand participants’ thoughts about and experiences with the COMPASS study and research participation generally. As this project was descriptive, we did not begin with theory and our goal was not to reach data saturation, but to answer the following research question: What are COMPASS participants’ perspectives, motivations, and health priorities related to CKD research participation and best practices for delivering kidney lab results to patients? In interviews, we asked patients about their decision to join COMPASS, experience participating, health priorities, and suggestions for conducting research within their community. See Table 1 for interview guide. The principal investigator CPA and qualitative methodologist HRB developed the interview guide based on the research question and their experiences and unanswered questions related to health research recruitment and retention in rural areas.

Table 1.

Primary questions of the semi-structured interview guide (not including prompts)

1. How long have you lived in the Cuba community?  a. What health problems do you see as most significant in your community? 2. Why did you decide to participate in the COMPASS research study which focuses on chronic kidney disease?  a. What were some of your concerns about participating in a research study?  b. What do you think of your experience participating in the research study?  c. Do you feel different after taking part in the research study? 3. What did you think about the results information letter?  a. Would you like to receive information about the published study results? *  b. What would be the best way to communicate the study results to the entire community? * 4. After receiving the results letter, did you make any lifestyle changes?

5. What was your understanding of chronic kidney disease before taking part in the study?  a. Now after receiving the results letter, what is you understanding of CKD? 6. What was your understanding of hypertension before the study?  a. Now after receiving the results letter, what is your understanding of hypertension? 7. What was your understanding of diabetes before the study?  a. Now after receiving the results letter, what is your understanding of diabetes? 8. What do you think would be the best way to recruit people in your community to join this study?  a. Do you think you would participate in more research studies?

*Added questions June 2020

Trained community-engaged and qualitative research specialists conducted these interviews from April 2017 through December 2020. Specialists reached out to participants by phone to inquire about their interest in taking part in the interview. For those who expressed interest, prior to the interview, specialists and participants underwent an informed consent process separate from the overall COMPASS consent. Each interview lasted up to 30 min, was audio recorded and professionally transcribed, and participants received a $20 merchandise card. Prior to the COVID-19 pandemic, we held these interviews in-person in a private room at the dialysis clinic in Cuba; all interviews in 2020 occurred over the phone or zoom.

We conducted descriptive qualitative analyses, using a team-based, iterative process and NVivo 13 (2020, R1, QSR International). As described in Saldaña (2016) [17] we conducted descriptive coding, followed by sub-coding, and code mapping. The primary analyst JEF created a preliminary codebook deductively using the interview guide. He and the senior qualitative methodologist HRB independently coded transcripts, meeting to discuss coding after each, adding to and modifying the codebook as needed. After five transcripts, they determined that they reached consensus, and then JEF coded the remaining transcripts.

The analysists met with members of the research team (CA, LM) to determine focus of second-round coding and analysis. Based on research questions and depth of participant quotes, we decided to conduct focused coding on Considering Participation, Experience, and Health Education. We queried for frequency counts to determine the number and percentage of participants with quotes in each code and quickly identify codes that were least and most discussed [22]. We conducted qualitative content analysis as described by Kuckartz and Radiker [23, 24] only for responses to questions about chronic kidney disease, hypertension, and diabetes, which gave us an understanding of how many participants learned more about kidney-related topics as a result of participating in COMPASS. Throughout, the analysts met regularly with the principal investigator CPA and content expert LM to discuss coding.

Results

Of the 213 people who participated in at least one COMPASS visit, 118 were eligible to participate in an interview, of whom 33 accepted and completed (response rate = 30%). Participants identified as 64% (n = 21) Hispanic, 24% (n = 8) American Indian, 54% (n = 18) female, and 67% (n = 22) aged 50 years or older. See Table 2 for demographics. The largest percentage of participants were high school graduates without any college education (n = 12, 42%) and were employed (n = 12, 36%) or self-employed (n = 5, 15%).

Table 2.

Self-reported demographics of interview participants at baseline

	N	%
Total	33
Gender
Female  Male	18 15	55% 46%
Race
American Indian or Alaska Native  Asian  Black or African American  Native Hawaiian/Pacific Islander  White  More than one  Unknown/not reporteda	8 0 0 0 10 2 13	24% 0% 0% 0% 30% 6% 39%
Ethnicity
Hispanic or Latino  Not Hispanic or Latino	21 12	64% 36%
Age
20–29  30–39  40–49  50–59  60–69  70–79	4 4 3 9 5 8	12% 12% 9% 27% 15% 24%
Education
Grade school or less (K-8)  Some high school (K9-K12)  High school graduate  Some college  Associate’s degree  Bachelor’s degree  Doctoral degree  Professional degree	0 6 14 7 5 0 0 1	0% 18% 42% 21% 15% 0% 0% 3%
Employment status
Employed  Unemployed  Self-employed  On disability	12 6 5 3	36% 18% 15% 9%

^a Many Hispanic or Latino people do not consider themselves White; these 13 also indicated Hispanic or Latino and Unknown/not reported

We identified two overarching categories: “Community” and “COMPASS.” “Community” included codes of health problems and resources. “COMPASS” covered the spectrum of participant involvement in a study: decision-making about participating; experiences with participation; health education they received during the study; recommendations to improve study experience; and interest in dissemination and potential future research participation. See Table 3 for a summary of descriptive analysis. We now consider these codes in greater detail.

Table 3.

Summary of descriptive analysis with frequency counts

Categories and Codes	Description and Example Quotes with Participant IDs	Participants N %
1. COMMUNITY	Health problems and resources in the community.
1.1 Health problems in the community	Health problems in the Cuba community including diabetes, chronic kidney disease, dementia, Alzheimer’s, arthritis, cancer, hypertension, methamphetamine use, and alcohol use. • …When you see them get full-blown diabetes, it’s terrible. It’s terrible. They’re no longer the same people that you knew before. They can’t live a normal life. They have to go in for treatments. You don’t see them very often anymore because that’s mainly what they do…Then, before you know it, you hear that they’ve passed on, and it’s sad. P194 • …a friend of mine [had] kidney surgery. They removed one kidney Monday. I know of one, two, three, four, five—eight or so individuals that have kidney troubles, and probably ten or so that have diabetes. P127 • Like, people on drinks and stuff, a lot of people are dying from it. I mean, that’s pretty much what’s going on around the community. That’s what I notice, like kidney failure and all that. P145 • Just really not good food decisions, not having money to make good food decisions, because really good food is slightly expensive…It’s a very poor community. P117	33a	100%
1.2 Resources in the community	Health-related resources in the community, including lack of resources as a barrier to healthcare. Other resources that are lacking include options for fresh food or clean water. • What we need is more hospitals here in Cuba…Why do people have to go all the way to Albuquerque when we have big buildings here? P166 • …Thinking about drinking that water my entire life here, I’m pretty sure that I put my kidneys through a heck of a lot, rather than just with booze. I’m not the only one. There’s these folks around here that can’t afford bottled water. They rely on tap water for drinking, cooking, and cleaning. A lot of that, I think, goes hand in hand with kidney disease that’s spreading out in rural communities because the water is not up to par and is not put in check and monitored like it’s supposed to. P110	15	46%
2. COMPASS	Related to participating in the COMPASS study.
2.1 Considering participation in the study	Reasons for and concerns about participating in the COMPASS study.	20 a	61%
2.1.1 Raising awareness or understanding	Reason for participating is to raise awareness of or increase understanding of kidney-related health issues. • Just seeing that something could be wrong with my kidneys…so I can fix it before it gets too late, or change something before it gets worse, because I’m scared of not being able to live that much longer. I have kids. P131 • I have a lot of issues that run in my family, so I was concerned for my health. That’s why I participated. P39	10	30%
2.1.2 Helping the community or contributing to science	Reason for participating is to help community or contribute to science. • …contribution to the future of our kids…and community for generations to come. Because what we have today and in my lifetime, our parents and grandparents, they struggled. They went through a lot. They contributed so that we have the medications and medicines and knowledge that we have that kept me alive.P194 • I participate because I’m curious about myself, but it’s something that I think is good for the community and try to get people involved in. P16 • I just wanted to be as helpful as I could be to the study. I think it’s important to do research on things, on kidney failure and stuff, so we can figure out more of the problem. P2	9	27%
2.1.3 Concerns about participation	Concerns, discomfort, fear specific to participation in the study, not about personal health. • I had never done [a study] before, so I guess it was just kind of like curiosity, but so far, it’s fine. P16 • Probably just what you need, like what do you do, like urine samples and drawing blood and stuff…It didn’t worry me. I was just kind of curious. I wanted to know what you need to be taking to get your results for that…just a little explanation. P157 • I don’t really like needles, but it wasn’t too often [that I needed to give blood]…I was kind of nervous, but I didn’t freak out. P132	8	24%
2.2 Experience in the study	Experiences in the study related to the results letter and any value they saw from their experience.	33 a	100%
2.2.1 Results letter	Comments about the results letter, lifestyle changes made because of their results/the letter, health literacy/ability to understand the letter, and seeking assistance to understand the letter. • …I recall getting good information that was interesting, but it’s been so long that I just don’t remember what was specifically on there. P14	33 a	100%
2.2.1.1 Lifestyle changes	Lifestyle changes they made (or didn’t make) because of results letter. • Yeah, I drink a lot more water now. I try to watch what I eat, not too much fatty foods. I’ve lost like 25 pounds now. P54 • It gave me an idea of where my health is and everything. It kind of helped me a little bit better to start taking care of my body and my kidneys and things like that more. P157 • I think, at that time, we were drinking a little bit more, so we kind of just stopped drinking, just once in a blue moon. P3 • …I stopped exercising…I kind of lost interest in it [thinking about lifestyle changes]. P145	26	79%
2.2.1.2 Health literacy/ ability to under-stand results	Any mention of having trouble understanding what was in their results letter (or not). • I think [the letter would] be more informative, in the sense that the numbers were a little bit too technical…For an uneducated person, I could see that it would be very difficult to read…less educated, not uneducated. P71 • Everything was easy to read. The only thing I remember is I understood it. I was happy with it. I didn’t have to call a doctor to explain it to me. That’s all that really mattered to me. P123 • Not being in the medical field, some of the things we didn’t understand…I know you wrote down what was acceptable and not acceptable and where we were at, but some of the terms, I didn’t know what they meant… P4	18	55%
2.2.1.3 Seeking assistance from a third party to understand the letter	Mentions of taking the results letter to someone else to help understand or interpret it. • …There were a few numbers that we weren’t too sure about. We have a friend who’s a nurse, and so we let her look over what the study was.P3 • I think my sodium level was out of range, and I Googled it, what’s normal range…P7 • It was right on, because I took it to my doctor because I have issues, and it was right on point. He was very happy with the letter that you guys sent. P39	20	61%
2.2.2 Value of participation in the study	Value stemming from the experience of being in the study including knowledge of kidney health status. • It lets you know if your kidneys are functioning, if there’s something going on. The information is good to have, especially if you don’t know. If there is something wrong, at least you’ll be aware, and you’re not just going through your years wondering, and then at the end, when it gets really bad, then you’re like, “Oh, I didn’t know.” P54 • …You can tell a lot more from the blood screening than you can from just going to the doctor and saying, ‘I’m sick,’ because they just treat the symptoms, and they don’t really get down to what’s causing it. P3 • I don’t go to the doc that often…I haven’t had a physical in I don’t know how long, maybe about 25 years or so. I’d like to get an idea of what my insides might be looking like… P110 • It was nice to find out where your ratings were, and even with it being where it needed to be, it was comforting to find out where I was. P16	27	82%
2.3 Health educatio	Knowledge of chronic kidney disease, hypertension, and diabetes before and after receiving the results letter. See Table 4 and Additional File 2 for example quotes and more information about this code.	33	100%
2.4 Recommendations for the study	Recommendations about how to improve the results letter, other aspects of the study, or recruitment.	33 a	100%
2.4.1 Results letter	How to improve the results letter. • I know that some people had a hard time reading their results, so maybe if you guys would have put what is maybe normal and abnormal. I think it’s kind of on there, but I think the older people had a harder time understanding it…I don’t think people understand if a high A1c, your sugar is high, like how their diet contributes to the diabetes and how it damages their kidneys. P7	9	27%
2.4.2 Study	Recommendations for how to improve the study, generally. • I guess it would be nice to have someone tell me what kidney disease is all about and what to expect if I get it and what the symptoms are and that sort of thing, because I don’t know. P119 • Maybe just have more classes out where we live and letting people know, like, nutrition that they could go by daily… P141 • For us elders…If they could maybe give us a call back or even another letter just to inform us say, “You know what? We haven’t received a response,” or something to that effect would be nice…[And] just more information maybe in writing would be good. P54	9	27%
2.4.3 Recruitment	Considerations to improve recruitment. Includes how they found out about the study (what works). • A lot of people don’t like new things or change…it’s kind of like a warning sign. Usually, once you get some people out there talking about it and doing it, sometimes you can develop interest in people. P16 • My daughter works at the clinic, so she’s the one who informed us, so word of mouth, but then we did find out about it, so we did refer a lot of our friends to it. P3 • In Cuba, sit in front of the post office…everybody goes to check their mail in a small town. You do it every single day religiously. P117 • If you guys have classes talking about the kidneys, how it does to people or how it makes people feel. That would be cool. For the little kids, too, where they could know what kidneys do for people, what makes them sick. They could take care of themselves and anything. You guys need to have a school, talk about kidneys more better that people could understand. P166 • The last time, we made flyers, and we passed them around. The thing is, where I work at, it’s a different county. There are others who would like to participate, but they’re in a different county… P4 • I just know that I had heard previously from community members that it would be easier for them to participate if there was a later clinic or on the weekend or something that they could do, because it was hard for them to get out for their lunch… P6	33	100%
2.5 Interest in seeing dissemination materialsb	Whether participants are interested in seeing study publications, plus ideas to share results with the community. • Might as well see what I contributed to…to see what the results were…If it says “Cuba area,” it’d probably be worth reading what’s happening in my area, as far as kidney and stuff like that. P71 • Not if I can’t do anything about it. I’d rather you send them to somebody that might do something about it instead of to me. I can’t do nothing about it…If you all find something in the water department troubles, in the air quality troubles here in this town or in the city of this town, hopefully you guys can let somebody else know about it that might be able to fix it. P127 • Probably letters. It makes it a lot more personal anymore. You can get emails or whatever, and it doesn’t seem special or anything anymore. Today, when you get a letter or something, you pay attention. P194 • Maybe pass it to the folks here at the Cuba clinic. Maybe some sort of a little seminar or a little something that they could pass on to the public as a whole, or the visitors that they have on a daily basis. P110	9	27%
2.6 Future participation in research	If and why they would be interested in participating in future research. • I think helping find causes or reasons why things happen is just beneficial to everybody. P6 • Because I like to know what’s going on with my body, especially now that I know a lot of different things and I would love to know what else I can do to help myself. P39 • You make a little bit of money for your blood. (Laughter.) No, it’s just good to keep up with—make sure everything’s good, especially as you get older. P3 • I think it’s good for people to be informed. It’s good to be helpful and not just be ignorant towards new findings. P2 • Just trying to help us and the best way to advocate for my people, because that’s all that there is, because pretty much all of the people that I know, they all passed away from liver cirrhosis. P145	33	100%

^a Aggregated and unduplicated number of participants for parent and sub-codes (e.g., if a person has one quote in a sub-code and none in the parent code, their n of 1 is captured in the parent code and in the sub-code; if a person has one quote in a parent code and another quote in the sub-code, they are not counted twice and the aggregate n = 1)

^b Questions about dissemination were added late in the study and only asked of nine participants

Legend: This summary includes codes, descriptions, example quotes with participant IDs, and number and percentage of participants coded to each code, split between the categories of Community and COMPASS

Community

Participants spoke about health problems and resources in their community (see Table 3 for example quotes). They frequently cited diabetes and chronic kidney disease as the most significant health problems. Many had experienced or knew someone with these conditions. Several suggested reasons for this, including lack of exercise, poor diet, or low income making it difficult to purchase healthy foods. Other health problems included dementia, Alzheimer’s, arthritis, cancer, hypertension, methamphetamine use, and alcohol use. They attributed some of these issues to lack of resources in their community. For example, many people must travel at least an hour for healthcare. Others mentioned poor water quality, and being a rural area, there are few options for fresh food.

COMPASS study

Most of the discussion revolved around the COMPASS study. This included considering participation, their experience participating, health education, recommendations to improve studies like COMPASS, dissemination ideas and preferences, and whether they would consider future participation in another study. See Table 3 for example quotes.

Considering participation. When asked why they decided to participate in COMPASS, participants discussed two primary reasons: to raise awareness of or increase their understanding of kidney-related health issues; and to help their community or contribute to science. For awareness and understanding, one person discussed putting “light on such a subject” and another wanted to know if she needed to fix her kidneys “before it gets too late.” To help the community, one participant said it was his “contribution to the future of our kids.” Others cited the need to contribute to science, as one woman said, “Because I believe in research studies.”

We asked if they had concerns about participating in research. Most said they were not concerned prior to participation, but a few said they had wanted more information about what participation would mean, including what they would get from it and what they needed to do. Two women were nervous because one was “not used to going to the doctor,” and another did not like needles.

Experience. Participants had much to say about their experience in the study, specifically commenting on the results letter, subsequent lifestyle changes, and any value they gained. When asked about the letter, several people had difficulty remembering much, if any, of its contents since they received it a year previously. Most people had a general idea of what it said, however, found it valuable, and many made lifestyle changes as a result. One man said it opened his eyes and, “It made me aware that, really, what I put into my body is what I’m getting out of it, in terms of alcohol or junk food, and in terms of diabetes and, of course, liver damage…That really did open my eyes to a lot of that stuff, but I thought…it didn’t apply to me, but I guess I was just fooling myself.”

Some said the letter made them want to be healthier, generally; others said they started eating “a lot of greens,” “trying to eat less fatty foods,” and “drinking more water daily.” Two said they decreased alcohol consumption, one stopped taking as much ibuprofen, and a few began exercising more. One person said they even lost 25 pounds because of diet changes as a result of the letter. Conversely, some people said they did not make many changes, if there were any, because they were not interested or because the letter said they were healthy. Two said they tried to be healthier and then “lost interest” or stopped trying as much, partially because of external factors, as one man described: “I tried to drink more water and not soda…after a while, it just kind of went by the wayside…”.

Some participants said the letter was easy to understand, but many said they had trouble understanding it, that it was “too technical” or “very difficult to read.” Many asked providers, family, or friends to help interpret their results. One person took it to his nurse friend, and another found more information online. Aside from interpretation, some people went to their providers for a second opinion or as a follow-up to the letter.

Many participants said their experience participating in the study was valuable, namely because of the information in the results letter. Two people said there was value in getting screened because they had not received this information from a healthcare provider. Some said it was good to know whether they were healthy, while others said it was good to know they needed to make changes.

Health education. We asked participants about their understanding of chronic kidney disease, hypertension, and diabetes before they joined the study and then after they received the results letter. Table 4 shows the number of participants who had personal experience or understanding, whether they knew more about these health topics after participating in the study, and example quotes. See Additional File 1 for all quotes coded to each category.

Table 4.

Health education. Qualitative content analysis of participants’ response to health education interview prompts with example quotes (Health education in Table 3)

	Chronic Kidney Disease n (%)	Hypertension n (%)	Diabetes n (%)
Total	33	33	33
Had personal* experience or understanding (pre)	12 (36.4)	7 (21.2)	16 (48.5)
Maybe knows more (post)	7 (21.2)	8 (24.2)	6 (18.2)
Knows more or has decent understanding (post)	10 (30.3)	8 (24.2)	8 (24.2)
Does not know more (post)	16 (48.5)	17 (51.5)	19 (57.6)

Example pre- and post-quotes
Chronic Kidney Disease • Pre (personal experience): “My understanding of kidney disease is what’s been in my family for as long as I can remember. It has killed numerous people in my family. It has taken their life, and it’s scary.” Post (does not know more): “I’ll be honest with you. I mean, our history goes back so long that, what is there to learn? It’s hereditary for us, and it’s a bad disease.” • Pre: “Not a whole lot. I didn’t know much, the functions of it…I think I [had heard of it], but I didn’t pay much attention to it because I’ve never had an issue with it or didn’t know anybody with issues with their kidneys.” Post (knows more): “I think it’s affected by medications and things that you take, and even food you eat and the amount of the water you drink. It all ties into healthy kidneys.”
Hypertension • Pre and post (do not know more): “I don’t know anything about high blood pressure. I don’t know how to answer that.” • Pre: “Bad eating, weight, diabetes causes high blood pressure, and it’s not good.” Post (maybe knows more): “Same understanding. Just what to do about it now…You take medication, exercise, all that stuff that I’m not doing. Eat better. Lower salt. I don’t know if that’s a thing.”
Diabetes • Pre: “Sugar diabetes? Well, my understanding of diabetes is that there’s a problem with the blood sugar level, which we can get at any time, especially as we get older, so it’s just good to participate.” Post (maybe knows more): “I think it’s all good. We have a pretty good idea. My [spouse] likes keeping up with the stuff, so [they keep] me posted.” • Pre (personal experience): “Diabetes was when you had a lot of sugar. That’s the way I thought it was…” Post (knows more): “That’s the way I thought it was, when you eat too much sugar, but it’s not. It has a lot to do with your triglycerides, your—all these other fancy words that I can’t say, because I’ve learned all those, believe me…I’m learning, because I just got diagnosed when I was fatter, and now that I’m losing it, my numbers are coming down. I’m learning about diabetes at the same time.”

*Self, family, friends, or professional

Legend: This table shows example responses to the prompts, “What was your understanding of [chronic kidney disease, hypertension/high blood pressure, or diabetes] before taking part in the study?” (pre) and “Now after receiving the results letter, what is you understanding of [chronic kidney disease, hypertension/high blood pressure, or diabetes]?” (post). Includes example quotes and number of participants for each type of response. See Additional File 2 for all quotes and their corresponding codes

Many mentioned previous experiences with chronic kidney disease (n = 12, 36.4%), hypertension (n = 7, 21.2%), and diabetes (n = 16, 48.5%); because of this, some said they did not gain knowledge from the letter. Experience did not mean they knew much about the disease prior to COMPASS, however, and some still gained knowledge, as one man described:

Before participating: “…Because my mother had [CKD], and my grandma has it, and my auntie has it, and my uncle has it, I just knew that they would just go get connected to a machine and that you really couldn’t pee no more. That’s all I pretty much knew.”

After participating: “Now I’ve learned that it can run in the family, also that if you don’t take care of your diabetes, you could get it…I thought you just got low blood sugar when you weren’t eating right on diabetes. I didn’t know you could lose limbs or get kidney failure and have to go on dialysis.”

Regardless of experience or knowledge, most (n = 28, 76%) did not know more about at least one of the three diseases after participating. Indeed, many did not even know what we were asking, particularly with the word “hypertension,” as exemplified in the following exchange:

Interviewer: “What was your understanding of hypertension before the study?”

Participant: “I don’t know. Hypertension would be like you’re very hyper and stuff like that. You get nervous, all that stuff.”

Interviewer: “After receiving the results letter, what’s your understanding now?”

Participant: “How do I understand it?”

Interviewer: “Yeah, I’m just trying to ask about how your understanding might have changed before and after the study.”

Participant: “Yeah, it would change. I would understand more what it’s about, how to go about it and everything, how to help myself, somebody like that can work with me or something.”

Recommendations. We asked participants for recommendations to improve the results letter and the study overall, and how to recruit in their community. The most common recommendation to improve the letter was to write it in more plain language with explanations of tests and implications in a way that more people could understand. One woman said she thought the letter was a “scare tactic”:

…It was making it sound like I had a kidney disease and I needed to talk to my provider immediately…He did check me out. He did find out there was nothing wrong with me…It was not as informative as I think it probably could have been. In other words, saying that, ‘We did find this in your kidney. You might want to talk to your provider, but you don’t have a kidney disease,’…To me, it felt like a form letter. Like, whoever was doing this project, we’re trying to cover their butt as far as making sure that they don’t get sued for some crazy stuff. I understand that…but still it was like a scare tactic because it scared the crap out of me. I thought I had a kidney disease.”

Others said they wanted more details about the various tests in the letter and one person would have liked to receive the letter sooner after their study visit.

Participants suggested other ways to improve health education, such as holding community classes, providing more written information, and follow-ups in person or over the phone. Everyone gave recommendations to improve recruitment or discussed how they learned about the study as a method that works for their community. Many learned about the study by word of mouth and also told others they knew about the project. Flyers were widely cited as a viable recruitment method and suggested other venues such as Craigslist, the newspaper, or tabling at the post office, health fairs, the senior center, and special events.

Some said it is important to build trust by spending time with and “getting more involved in the community.” A couple of people suggested doing this by holding education classes or, as one woman said,

Just make a presentation somewhere; tell them that you’re not going to hurt them. A lot of people in this area…they’re scared…you have to really convince them that it’s okay, you’re not going to scare them, it’s not going to hurt, because they’re set in their ways, and their ways are the old ways.

Finally, adding flexibility could increase participation. For example, expanding study inclusion to neighbouring counties and having visits available evenings and weekends.

Dissemination. Of those we asked if they would be interested in receiving published study results, all but one said they were. When we asked for suggestions about community dissemination, they recommended sharing through social media, bulletin boards, the Cuba clinic, direct mail, or presenting it as a seminar.

Future participation. Finally, everyone said they would or may be interested in participating in future research. Four people said they would participate, depending on the specifics of the study (e.g., “the whole needle thing”), including scheduling and time commitment. When asked why they would be interested, their reasons were similar to what they gave for participating in COMPASS: most were interested in learning about their own health and how to prevent or treat disease; a couple cited earning money; others said they believe in research, that it is beneficial to everyone, and they want to help their community.

Discussion

This unique report provides insights from a subset of participants in the COMPASS study. Overall, rural community members in our research project embraced the opportunity to participate in kidney health research with positivity and enthusiasm. The visualization tools for displaying lab results were well-received, but patients needed help interpreting results. This is a novel finding because visual aids such as the one suggested by the NIDDK and the NKF [18] are widely utilized but have not been formally evaluated for their ability to enhance one’s understanding of what may be wrong with their kidneys. The results letter, however, still inspired positive lifestyle changes for many, which underscores the beneficial impact of clinical research in these communities. Following, we discuss some major takeaways from our interviews, with recommendations and suggestions for future studies.

Regarding reasons for research participation, we found our study participants thought collectively about community members, family, and friends in addition to increasing their understanding of kidney-related health issues. The seminal paper by Holzer, Elils, and Merrit [25] highlighted mistrust, low participation, and low uptake of research findings as “shortfalls in the US public’s regard for medical research.” They illustrated the importance of community-engaged research on relevant topics to the community as a demonstration of respect. Our experience in this study illustrates how crucial the community is: participants wanted to raise awareness of the project and hence help their community and contribute to science and to the future of their kids. They also shared concerns about research participation; some were concerned about potential benefits while others expressed concerns about the medical visit process. This underscores the importance of providing clear information during the informed consent process with concise and easy-to-understand information about potential benefits and risks. We should also provide, if feasible, alternative resources for health education and health provision. Finally, when asked how they heard about the study, many responded through word of mouth and provided recommendations to improve recruitment aligning with the literature, including engaging with local community members and advertising through local media and businesses [26, 27]. Of note, we ran advertisements in the local newspaper monthly for over three years and distributed flyers in the library and senior center. Hence, recommendations made by our participants suggest these activities “seed” word-of-mouth network effects through local, community-based advocates of the study.

Participants discussed many important points related to the results letter. Most found it useful, valuable, and mentioned important lifestyle changes they made as a result, like exercising more, drinking less alcohol and more water, improving dietary habits, and losing weight. Of note, some participants said this was the first time they had been screened for kidney function. Even with these positive outcomes, many participants had difficulty understanding the letter and reached out to physicians, family, friends, or the Internet for help. We suggest the use of community advisors or community health workers to help write letters in plain language and be available for interpretation.

We asked participants about their understanding of CKD, hypertension, and diabetes before joining the study and after receiving the results letter. Interestingly, approximately half of participants did not gain knowledge about these topics. Particularly, some people had trouble with the word hypertension but understood “high blood pressure.” This highlights the need to use plain language medical terms not only in the letter, but also while speaking with people in interviews or clinical visits. Some people expressed nervousness about the health education questions and felt like they “needed” to know the answers. This highlights the issue of potential power dynamics as well as the importance of using best practices in interviewing techniques (e.g., not asking “why” questions and putting people at ease [28–30]). It was also clear that there is an unmet need for better health education and greater health literacy since misconceptions regarding the potential risk factors for CKD were unmasked from these interviews.

Our study seemed to benefit this rural community and posed a few limitations as well. Interviews occurred about a year after participants got the results letter from their first visit, so it was difficult for people to remember the content, what they thought about it, and/or if they made any lifestyle changes as a result. Participants also said diabetes/CKD is a health priority, but this could have been influenced by the questions in our interviews. To gain less biased answers, it would have been better to ask the community about their health priorities prior to the study. This research aim was not added until the parent study was underway, however, after a participant casually mentioned to a coordinator that the study was valuable to the community. Finally, it was unclear whether participants actually gained knowledge about health conditions from their results letters. The incorporation of a pre- and post-study survey may help future studies more clearly define these gains. Such studies should evaluate knowledge gained by visual depictions of kidney function (eGFR) and proteinuria (UACR). Analogies such as the eGFR “speedometer” or simplified drawings of the filtering apparatus inside the kidney showing leakage of protein in the urine, may not be sufficiently understandable or engaging to motivate patients to make life changes, adhere to guideline therapies, or even participate in future kidney-related research studies. Extrapolating from our observations that participants do understand the importance of kidney and cardiovascular health for their communities, we feel that future community studies or initiatives to increase awareness of CKD should integrate our qualitative findings.

Conclusions

COMPASS was designed as a community-engaged kidney health screening and translational biomarker research program for participants in a geographically defined rural area in NM [5]. We found community members embraced the opportunity to participate in kidney health research with positivity and enthusiasm. The greatest motivator was to help their community and raise awareness regarding diabetes, hypertension, and kidney health. Many participants made beneficial lifestyle changes and increased their understanding of kidney-related health issues. They provided insights to improve future research studies, including the informed consent process and the need for plain language medical terminology in interviews and results letters with input of community advisors or health workers. Ultimately, we believe the need to increase health literacy and enhance health education must be balanced by each community’s health priorities in rural areas.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

CKD

Chronic kidney disease

COMPASS

Community Based Study of the Epidemiology of Chronic Kidney Disease in Cuba New Mexico and Surrounding Areas

ESKD

End-stage kidney disease

NKF

National Kidney Foundation

NM

New Mexico

Author contributions

The research team was made up of nephrologists, kidney researchers, and content experts at the University of New Mexico’s Division of Nephrology and community engagement and qualitative research specialists at the University of New Mexico’s Southwest Center for Advancing Clinical and Translational Innovation (formerly the Clinical and Translational Science Center). All authors were involved in reviewing and editing drafts of the manuscript, interpretation of the final analyses, edited and approved the final version of the manuscript. HRB trained and oversaw the qualitative research specialists who conducted interviews and analysis; she reviewed and contributed to all analyses and wrote the methods and results section of this manuscript. MR wrote and mailed participant results letters, reviewed final analyses, and co-wrote the introduction and discussion of this manuscript. JEF conducted many of the interviews and preliminary qualitative analysis. DS provided clinical context for the interpretation of the analyses. LM provided content expertise and scientific oversight of the qualitative activities and the analyses of the project. CA was the project leader who designed the COMPASS protocol, obtained funding, and developed the qualitative and quantitative instruments used in the project.

Funding

The COMPASS Study is supported by grants from Dialysis Clinic Inc & NCATS (UL1TR001449, UM1TR005466). Additional funding for Dr. Myaskovsky’s work on this manuscript was supported by New Mexico Higher Education Department Technology Enhancement Fund (3RQF8A) and Dialysis Clinic Inc (C-3924).

Data availability

The Vivli (http://www.vivli.org) Center for Global Clinical Research Data will be used to generate a unique DataCite DOI for sharing of data and meta-data upon final acceptance for peer-reviewed publication.

Declarations

Ethics approval and consent to participate

This study was approved by the University of New Mexico Human Research Review Committee (HRRC #15–575) and all participants provided informed consent. The University of New Mexico Health Sciences Center holds a Federal Wide Assurance (#00003255) approved by the Department of Health and Human Services. Under this agreement, the University of New Mexico Health Sciences Center assures that all of its activities related to human subjects research will be guided by the WMA Declaration of Helsinki and the Belmont Report.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.