April 01, 2019
3 min read
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Connection between patient engagement and outcomes comes into focus

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The paternalistic approach to the treatment of kidney disease in the United States stretches back to 1973, when enactment of the newly Medicare-funded ESRD program stimulated private enterprise to move dialysis care from the home to in-center clinics. If you see that as a positive, then it has been a success, with close to 90% of patients who are treated in-center under the care of dialysis staff.

Many patients still feel that in-center care is their comfort zone, but recently discussed efforts to increase the creation of self-care units and push more patients to consider home dialysis suggest that patient engagement in decision-making about kidney care is starting to grow.

Mark E. Neumann

Complex treatment

Asking patients to be proactive in the selection of the modality that suits them best is the first step, but it can become a more difficult climb after that.

“Kidney disease is a life-altering disorder that is not only extremely stressful but is a treatment that is not always easily tolerated,” Harold Szerlip, MD, said in an interview with Nephrology News & Issues. Szerlip is chair of this year’s National Kidney Foundation Spring Clinical Meetings. “We can no longer just tell patients that their kidneys have failed, and they will need dialysis. Patients need to understand their options and what lies ahead.”

Studies have shown that patients who are proactive and make those choices and are actively engaged in their health will see better outcomes. “Chronically ill patients with higher activation levels are more likely than those with lower levels to adhere to treatment; perform regular self-monitoring at home; and obtain regular chronic care, such as foot exams for diabetes,” Judith H. Hibbard, PhD, a senior researcher at the Health Policy Research Group at the Institute for Sustainable Environments and a professor emerita in the department of planning, public policy and management at the University of Oregon, and Jessica Greene, PhD, a professor and director of research at the George Washington University School of Nursing in Washington, noted in an article published in Health Affairs. They added: “Less activated patients are also three times as likely to have unmet medical needs and twice as likely to delay medical care, compared with more activated patients. Highly activated patients are two or more times as likely as those with low activation levels to prepare questions for a visit to the doctor; to know about treatment guidelines for their condition; and to seek out health information, including comparisons of the quality of health care providers.”

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Opportunity to participate

In presenting the future direction for CMS and the ESRD program in a talk in February in Washington, HHS Secretary Alex M. Azar II didn’t choose dialysis company executives or nephrologists as his audience; he chose patients. Azar’s father was on dialysis and later received a kidney transplant. “Today, I want to lay out what it would look like to pay for kidney health, rather than kidney disease — and pay for Americans with kidney disease to actually get good outcomes, rather than the endless, life-consuming procedures that you all know so well,” Azar said during the NKF’s Annual Kidney Patient Summit. “ ... We don’t begin spending a great deal on these patients until they’re already sick. It is the epitome of a system that pays for sickness rather than health, and this administration is intent on shifting these priorities,” Azar said.

The recent launch of KidneyX, a new public-private partnership program aimed at stimulating more research and development in nephrology, includes patient involvement in helping to determine what a new dialysis machine or vascular access device should accomplish.

Patients can shake that paternalistic blanket and engage in discussions about how the future looks. What will make being on dialysis a less stressful experience? Ask the dialysor.