When people say, “in an instant, your whole life can change,” you think of being hit by a car or diagnosed with cancer, but that moment happens to the 360 Americans who begin dialysis each day. Dialysis keeps them alive, but it’s debilitating, expensive and consumes a person’s time and quality of life. Too many people who experience this shock never knew they were sick until the moment they are told their kidneys have failed.
Chronic kidney disease (CKD) is one of the leading causes of death in the U.S., but it’s called a “silent killer” with good reason. Since early CKD has no symptoms, people can go years without knowing they are sick. An estimated 37 million Americans have CKD, but 9 in 10 people don’t know it and 1 in 3 with severely reduced kidney function (but not on dialysis) still don’t know.
It doesn’t need to be this way.
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If doctors identify who is at risk earlier, talk to their patients about kidney health, and help patients manage disease progression, many may be able to avoid kidney failure and dialysis. There are numerous known factors that can increase someone’s risk for CKD, including high blood pressure, diabetes, obesity, and cardiovascular disease— meaning we can easily identify who is at risk and should be tested.
This is more important than ever because new therapies are showing great promise for preventing kidney failure and other complications of the disease. For example, just a few weeks ago a major clinical trial found that semaglutide, the drug in Ozempic and Wegovy, can reduce the risk of kidney and heart complications in people with Type 2 diabetes and CKD.
However, these new treatments will only work if patients are truly playing an active part in their own care. Patients need the knowledge, skills and confidence to take proactive steps to manage their kidney health, whether that’s knowledge about testing, a new drug, adherence to the medication or ways to make simple behavior changes. New research published in the American Journal of Accountable Care with The National Kidney Foundation drives this home.
A survey of 4,445 patients diagnosed with diabetes and/or hypertension, two key risk factors for CKD, found that two in three of these patients did not know they are at risk for kidney disease. Even 8 years after diagnosis with diabetes or hypertension, only half of patients were aware of the risk.
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A big part of the challenge is that doctors and patients aren’t talking about kidney health and CKD: Just under six in ten patients with diabetes recall having discussed kidney health with their physician, and only four in ten patients with hypertension had. What determines whether these crucial conversations happen is how well a patient can self-manage their health—in other words, if a patient is more activated.
We know that activated patients have better health outcomes, so it is no surprise that those with higher activation levels are significantly more likely to have discussed kidney health with their provider. Not only that, but activated patients with diabetes or hypertension are also more aware of the link between their condition and kidney health. This, in turn, means they’re also more likely to be taking preventive measures early on, like maintaining a healthy diet and exercising regularly.
In the period between when a patient is first diagnosed with diabetes and/or hypertension, and when they develop kidney disease, their awareness and behaviors matter, and directly impacts health outcomes. Doctors are already overwhelmed and burned out, and understandably, preventive care falls behind more pressing health concerns their patients may have. But when patients are informed and confident in their ability to manage their health, they’re more likely to ask questions of their doctors and initiate conversations about CKD. Not only that, but they are more likely to engage in complex self-management behaviors like managing their salt intake, and are also more likely to start and adhere to their medication regime. This means that improving patient activation is a key strategy to slow the progression of the disease.
There is growing momentum behind using the Patient Activation Measure (PAM) to support patients with kidney disease once they have been diagnosed. Interventions to support patient activation are already underway in some quality programs, like the Centers for Medicare and Medicaid Services Innovation Center’s Kidney Care Choices (KCC) Model. CMS also recently included patient activation in its Merit-based Incentive Payment System (MIPS) as a measure across 18 specialty sets and five MIPS Value Pathways, including for kidney health.
Supporting patients with CKD to better self-manage their health can slow the progression of the disease and help them manage home dialysis or get a transplant if their kidneys fail. But we have to identify who is at risk earlier, before their kidney health has deteriorated and when treatment is less costly in dollars and quality of life.
There are multiple ways to detect kidney disease sooner, through increasing patient activation and encouraging patient-provider conversations around kidney health. Personalized messages delivered to patients at the point of care prompt more conversations with providers. Public health awareness campaigns would encourage patients to initiate the conversations; Automated reminders to providers to talk to their patients about CKD and testing would also help. These are easy to implement relative to the intensive and expensive treatment for kidney failure, and could save thousands of lives. More conversations mean more screening for kidney disease which means more preventive medications and behaviors.
The preventive treatments are available—no one should ever learn about CKD after their kidneys have already failed. We have the cure that will help us get there—it’s ensuring patients can take an active role in their care and have a life-saving conversation with their provider.
Photo: Flickr user agilemtkg1
Hilary Hatch, Ph.D., a clinical psychologist and champion of the patient voice, serves as Chief Clinical Officer at Phreesia, where she leads the development of clinical programs and research partnerships. She helps provider organizations improve patient outcomes and deliver a personalized digital experience through the implementation of patient-reported outcomes (PROs), social drivers of health (SDOH) screenings, and other tools to close gaps in care and increase medication adherence.
Dr. Hilary Hatch leads Phreesia’s work with the Centers for Medicare and Medicaid Services and has been instrumental in advocating for patient activation to be included as a quality measure in federal programs. She also oversees efforts to improve the accuracy and inclusiveness of patient-reported data, including race, ethnicity, and sexual orientation/gender identity.
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