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Patients, caregivers, researchers and physicians shared the stage for the Christiana Care Value Institute’s Fall 2017 symposium.
VALUE INSTITUTE SYMPOSIUM | CONTINUED Care transitions key
Jamie A. Green, M.D., MS, a nephrologist and clinical investigator at Geisinger Health System, shared information about the PCORI-funded Prepare Now project to empower patients to have more control over their health transitions and improve their quality of life. The project includes early identification of people with kidney disease, informing patients and providers when patients are at risk, increased patient education and preparing patients for future dialysis or transplantation.
About 100,000 Americans enter end-stage renal disease each year. As their disease progresses, patients face unpredictable futures, a lack of control, new treatment decisions and insufficient support to follow through with clinical recommendations.
A major part of the study has been the creation of a database of the health system’s chronic kidney disease patients. The registry allows the team to identify the patients at higher risk of end-stage renal disease. Their risk is assessed using an equation that takes into account the patient’s age, sex, an estimate of protein in the urine and a measure of kidney function called the glomerular filtration rate, or GFR. Other elements of project include a nurse who specializes in supporting patients with advanced kidney disease, classes about living with kidney disease, decision aid with information to help patients weigh their options for renal replacement therapy, a patient values tool
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that guides patients to treatment options based on what matters to them, and an electronic health record alert to inform providers of treatment preferences.
When patients were asked to pick
an outcome to track, they picked empowerment, Dr. Green said. “They felt they’d lost control in managing their disease,” she said.
Exercise, adult transitions
Researchers and physicians joined patients in sharing their perspective on the illness during the symposium.
Joshua J. Zaritsky, M.D., Ph.D., chief of pediatric nephrology at Nemours/A.I. duPont Hospital, spoke about gaps in care for those transitioning between childhood and adult systems. A key finding: Chronic kidney disease may have a “subtle but persistent” effect on brain development, so adults may need extra assistance managing their care.
David G. Edwards, Ph.D., a professor in the University of Delaware’s department of kinesiology and applied physiology, spoke about his team’s exercise study in patients with kidney disease. They found exercise improved exercise capacity
and increased brachial artery flow mediated dilation — low dilation is a risk factor for hypertension—though the dilation finding did not reach statistical significance. Dr. Edwards and his team at University of Delaware have also created a renal rehab program where exercise
is individually tailored to patients with chronic kidney disease or undergoing dialysis and kidney transplant.
Vincent R. Skrezyna Sr., a PKD patient who received a kidney transplant in 2010, shared his story about how a positive perspective and a will to survive help him cope with his illness. He said, “I find my therapy is keeping busy and not giving up.”
Engaging patients, caregivers in Delaware
Christiana Care’s own PCORI-funded project had its first major gathering a year ago, during which patients were asked about their priorities for research. Education and coordination of care emerged as top responses, according to a thematic analysis conducted by the Value Institute.
Their next step is to convene a workgroup to find consensus about patients’ priorities in research, said Dr. Jurkovitz, the PCORI project lead.
Caregivers sometimes report difficulty coordinating care among several providers, many of whom are specialists in one aspect of health but cannot provide an overall picture.
Amy Pollock, a symposium attendee, said she’d appreciate help in looking at the big picture as she cares for her husband. “I need somebody I can bounce facts off,” she said. “This is part of what I’m looking for,” she said. “This conference is out in front of what’s coming next.” ●