Caroline Jennette: Sure. So, the primary goal of the Kidney Education Outreach Program, or KEOP for short, is to educate at-risk North Carolinians about their risk factors for developing chronic kidney disease, which can lead to end-stage kidney disease, which is a condition that requires dialysis, or transplant for survival, and the State of North Carolina actually ranks ninth in the United States for overall prevalence of end-stage kidney disease. And progression from chronic to end-stage kidney disease can often be slowed, or even stopped, with early detection and appropriate disease management. So what we do at KEOP, is we work to increase awareness, by 1. assessing preconceptions of kidney disease by utilising focus groups, which is what was done and reported on in this manuscript; 2. delivering information in formats that promote active learning, through interactive community based informational sessions; and then 3. Providing the opportunity for citizens to actually be screened for kidney disease and be provided with one-on-one counselling and written summaries of results and recommendations for further disease management if necessary.

Hamish Holewa: And, in your study you looked at the importance of knowledge regarding kidneys and kidney disease. What was the participant’s knowledge of the disease, and how does that influence health related behaviours?

Caroline Jennette: What we found was, study participants typically knew where the kidneys were in the body and they knew what their typical function was, including acting as a filter, and partly as a result of holding focus groups with at-risk populations, many participants had friend or family members who were actually on dialysis, and typically associated their knowledge of kidneys with dialysis. When dialysis was mentioned, it was consistently viewed as a negative process, and a burden on both dialysis patients and their families. We also asked participants what they thought the risk factors for kidney disease were, and then their answers routinely focussed on general lifestyle factors, including obesity, alcohol intake, sugar intake. Participants did express a need to better understand risk factors, and many did not actually associate kidney disease with its primary risk factors, which are high blood pressure and diabetes.

Hamish Holewa: Yes, and also in your analysis, fear was mentioned by a majority of focus groups as a barrier to health care. Do you just want to explain that notion, and the issues this rose with service delivery?

Caroline Jennette: Sure. So fear came up quite often as a barrier to seeking appropriate medical care. And for many participants, fear was manifested in the anticipation that they would not be able to afford to pay for things, like subsequent treatment and procedures, or be able to access transportation to see the specialists that some diagnosis would require. And regarding service delivery, participants expressed that they weren’t really comfortable interacting with physicians, and in some instances were afraid to question what their physicians told them, even if they didn’t understand or disagreed.

Hamish Holewa: So there is two kinds of fears there, I suppose; one about accessing service delivery, and then, the actual consultation?

Caroline Jennette: Correct.

Hamish Holewa: Yes. And, In your article, also, participants noted some novel outlets for screen locations and community health outreach. Do you just want to elaborate on those outlets and community outreach programs?

Caroline Jennette: So in terms of screen locations, we were a little surprised at how much Wal-Mart came up as a possible screening place. And Wal-Mart is actually a chain of large department stores that often have a grocery store attached as well. And especially in rural areas, they’ve become the place where people travel to shop. Other places that were mentioned, were churches – those were mentioned frequently. This is not as surprising to us, though, because in the South, Churches are often the hub of social activity in rural communities. And many actually also have their own health Ministry. Some participants also noted that work site screens would be helpful, especially if employers allowed time away from work to participate.

Hamish Holewa: Right, ok then, excellent. And, what are the practice implications arising from the study?

Caroline Jennette: Well, in terms of community based outreach and education, there are a couple of implications that we think can be called from participant responses. For one thing, I think our results highlighted the need for better interaction between patients and health care providers. So we have many study participants explain that they couldn’t open the lines of communication with providers, because they didn’t know how to start, or what questions they were even supposed to be asking. So as a result of this, we now actually give out laminated cards at screenings and other educational sessions, with risk factors and common tests for kidney disease, if they go to the screening, along with the copy of their screening results. And so what this allows them to do is, to go into their doctor’s office armed with some medical terminology and an understanding of what their risk factors for kidney disease are. Another prominent implication from the study is, really the need to focus on positives, to override the fear of disease, especially when it comes to end-stage kidney disease. So we had a lot of participants who had experiences with family and friends on dialysis, and they expressed to us that they were afraid of ending up in the same place, and they may actually stay away from testing to remain in denial. So in our outreach activities, we focus on the positives of prevention, and we stress that screening for kidney disease can actually help catch the disease early, and help prevent them the need for ever having to go on dialysis in the first place.

Hamish Holewa: Yes, a good goal as well. Well thanks Caroline for speaking with us today on IPP-SHR Podcasts.

Caroline Jennette: It’s my pleasure, thank you.