Season 3 Episode 8: Uncovering the Silent Surge of Chronic Kidney Disease in Long-Term Care

Andie Morataya

Welcome back to Better Living Through Data. Today we're talking about chronic kidney disease. Anthony, back in Season 1, we came at CKD through a public health awareness lens for National Kidney Month. We talked about a PointClickCare cohort of 4.1 million records and 300,000 active patients. What's different this time?

Anthony Pero

Two things. The cohort has grown, and we want to go deeper into what long term care data can actually see. The CKD dataset now holds nearly 4.4 million unique patient records, and nearly 350,000 of those are active. And the latest CDC surveillance report, updated in March 2026, puts a number on the problem that I can't stop thinking about. About 9 in 10 adults aged 20 or older with CKD, 87 percent, did not know they have it.

Andie Morataya

Nearly 9 in 10 people who have it don't know? That's wild!! How can that be?!

Anthony Pero

Because early CKD is silent. The kidneys slowly lose their ability to filter waste and extra fluid, and the disease is defined by that damage lasting three months or longer. We stage it with eGFR, which shows how well the kidneys filter. Stage 1 is 90 or higher, but with some other sign of kidney damage. Stage 2 is 60 to 89. Stage 3 is 30 to 59, and it splits into 3a and 3b. Stage 4 is 15 to 29. Below 15 is Stage 5, kidney failure, where someone may need dialysis or a transplant. The symptoms, like fatigue, swelling in the ankles and feet, shortness of breath, nausea, poor sleep, trouble concentrating, mostly show up late.

Andie Morataya

So by the time someone feels it, the damage is already advanced. And I'm guessing age matters a lot here.

Anthony Pero

It matters enormously, and it's the reason this show cares. The CDC estimates that more than 1 in 10 US adults, 14 percent, about 37 million people, have CKD. But look at the age curve. Among adults 18 to 44 it's about 6 percent. For 45 to 64 it's about 13 percent. For adults 65 and older, it's 34 percent. That's roughly 20 million older adults.

Andie Morataya

And the risk factors stack on top of that, right? Diabetes, blood pressure.

Anthony Pero

They do. Among adults with diabetes, diagnosed or not, 38 percent were estimated to have CKD. It's 41 percent with type 2 and 49 percent with type 1. Among adults with high blood pressure it's 21 percent. And even among people with prediabetes it's 11 percent. The CDC also found higher prevalence in non Hispanic Black adults, at 22 percent, compared with 13 percent for non Hispanic White adults and 12 percent for Hispanic adults.

Andie Morataya

I want to be careful with these numbers, though. Are there caveats?

Anthony Pero

Good instinct, and yes. These estimates come from a national survey, NHANES, from August 2021 to August 2023, and they cover Stages 1 through 4. Stage 5 was left out because the sample was too small. And they rely on a single measurement of creatinine and urine albumin. Clinical guidelines want to see the problem persist over time, so the CDC itself says CKD in this report might be overestimated. That's a fair reading of the limits. It doesn't change the awareness gap in a way that should let us relax.

Andie Morataya

So that's the picture from a national survey, a snapshot. How does long term care data change what we can see?

Anthony Pero

Think about how CKD is usually caught outside a facility. Someone gets bloodwork once a year, if they show up. If they miss it, identification can slip by for years. Now compare that with our long term and post acute care records. We capture on average more than 50 data points per patient per day, across more than 15 million patients aged 65 and older, spanning over 10 years, with an average long stay of more than 800 days.

Andie Morataya

And what kind of data is collected specifically for CKD?

Anthony Pero

Start with the kidney labs themselves: eGFR, serum creatinine, urine albumin to creatinine ratio, urea nitrogen, lipid profile. Then the daily observations: blood pressure, blood sugar, pulse, respiration, temperature, pain, and weight. Weight is the one I'd point to. Daily weights matter for fluid overload, because swelling and shortness of breath are exactly the late symptoms we just listed. A steady upward drift on the scale can be a signal that fluid is building up, ideally before someone ends up in the emergency department.

Andie Morataya

And that's not only physical, right? CKD touches thinking and function too.

Anthony Pero

Yes. The quality of life measures include fatigue, shortness of breath, frailty indicators, and functional status. For cognition, there's a technical note worth knowing. The Cognitive Performance Scale comes from MDS Section G, and after the 2023 transition away from that section, it may not be reliable for newer data. The Brief Interview for Mental Status, the BIMS, is the recommended measure instead.

Andie Morataya

That's a great detail, because it shows the data comes with guardrails. What about treatment? Because I know the therapy landscape has been shifting.

Anthony Pero

It has. ACE inhibitors and ARBs have long been foundational for protecting kidney function. More recent additions include SGLT2 inhibitors, and nonsteroidal mineralocorticoid receptor antagonists, the MRAs, with finerenone as an example, along with GLP 1 receptor agonists and statins. The dataset tracks uptake and dosing for those classes. So a researcher can ask a very practical question: do frail older adults actually receive these therapies, and at what doses, and what happens to them afterward?

Andie Morataya

I'd say that's the heart of it. The trials don't always reflect the people we're talking about.

Anthony Pero

That's my interpretation, so take it as that, but yes. It's the reason we frame this as real world evidence. The dataset also follows hospitalizations, ED visits, length of stay, and dialysis initiation, including time to dialysis and whether someone goes on hemodialysis or peritoneal dialysis. That opens up questions about what drives a move toward dialysis, and how proactive fluid and diet management might reduce avoidable transfers.

Andie Morataya

So if I'm summing up: the CDC tells us how big and how hidden the problem is, and long term care data lets us watch it unfold day by day.

Anthony Pero

Exactly. In Season 1 we raised awareness. Here the point is that 4.4 million records, daily weights, regular labs, and years of follow up can turn awareness into evidence. For people who are overlooked and underserved, that's how data starts to change care.

Andie Morataya

Thanks everyone for listening to today's episode of Better Living Through Data. If you're interested in learning more about our clinical CKD dataset, you can visit the link in today's podcast description.

Anthony Pero

We'll see you next time.

Andie Morataya

Bye everyone!