Page 20 - FOCUS December 2017

RESEARCH
Value Institute symposium explores issues affecting people with chronic kidney disease
Patients, caregivers, researchers and physicians shared the stage for the Christiana Care Value Institute’s
Fall 2017 symposium, “Engaging Stakeholders for a Patient-Centered Agenda for Chronic Kidney Disease
in Delaware,” at the John H. Ammon Medical Education Center in September.
This event was the latest step in a Christiana Care project of the same
title, funded by the Patient-Centered Outcomes Research Institute, or PCORI, to engage patients, caregivers and health care providers in setting priorities for kidney care research.
The project is led by Claudine T. Jurkovitz, M.D., MPH, senior physician scientist at Christiana Care’s Value Institute.
“We don’t want to conduct research in a vacuum,” Dr. Jurkovitz said. “We want the community to guide our research and to tell us what they most care about.”
What patients care about and what their providers measure are often very different.
Christiana Care Health System patient Steven Scott was diagnosed with
an inherited kidney disorder called polycystic kidney disease, or PKD, when he was 15. But his more recent diagnosis of kidney failure was still a shock.
Scott was thriving with a donated kidney until 2015, when an infection that started in his toe spread through his body.
“It was fine, then — boom,” he said.
Scott, who now dialyzes himself at home and is on the waiting list for a transplant at the Christiana Care Kidney Transplant Program, is a member of Partners in Research, a stakeholder team the Value
Institute at Christiana Care assembled to put the patient experience at the center of kidney care.
Chronic kidney disease is a progressive illness in which the kidneys slowly lose their ability to filter blood. Because
the illness is usually asymptomatic, its diagnosis tends to come as a shock, with organ failure and dialysis looming ahead.
Creating effective systems to treat patients with chronic kidney disease, which affects more than 20 million Americans, will mean seeing the kidney treatment continuum from the patient’s
perspective. That will entail a renewed emphasis on education at each stage of the illness, on facilitating the transition to dialysis and on patient control and shared decision-making.
Patient preferences change care
Patient preference is not incidental to their care, said Amar D. Bansal, M.D., assistant professor of Medicine at the University of Pittsburgh Medical Center, at the symposium. It truly matters.
For example, a national survey found that more than 9 in 10 nephrologists would prefer home dialysis over in-center dialysis for themselves if their kidneys were failing. But fewer than 1 in 10 of patients are dialyzed at home. Care at home doesn’t work for every patient, but the survey suggests that what physicians recommend to patients is different from the treatment modality they would consider ideal for themselves.
Claudine T. Jurkovitz, M.D., MPH, senior physician scientist at Value Institute.
About 100,000 Americans enter end-stage renal disease each year.
20 • FOCUS DECEMBER 2017
“We want the community to guide our research and to tell us what they most care about.”
Claudine T. Jurkovitz, M.D., MPH