A new project launched by National Kidney Foundation and Tufts University
New York, NY—October 10, 2018—The National Kidney Foundation is collaborating with Tufts University on a three-year project to help older patients with advanced stages of kidney disease and their family care partners make decisions that best reflect their goals and preferences for care. Funded by the Patient Centered Outcomes Research Institute (PCORI), the project “Promoting Autonomy and Improving Shared Decision Making for Older Adults with Advanced Kidney Disease” will address a major concern voiced by patients and care partners about how to best help older patients choose the care that meets their needs and preferences and enables them to engage in activities most meaningful to them.
“Seniors may not recognize that starting dialysis is a choice and they may not be aware that other options, such as maximal medical therapy without dialysis is an appropriate option for some with kidney failure,” said Joseph Vassalotti, MD, Chief Medical Officer, National Kidney Foundation.
“Adults over 70 years old are the fastest growing segment of the dialysis population. Decisions about treatment options can be complicated and should be individualized. Although many older patients may have difficulty deciding between dialysis and conservative management, they are often poorly informed about the relative harms and benefits of these two strategies, including how either one could affect the duration and quality of their life,” added Dr. Vassalotti.
An example of individualized treatment for two patients the same age would be a 72-year-old who lives independently and has an active work and home life, may consider all forms of dialysis and even kidney transplantation. In contrast, a 72-year-old wheelchair bound nursing home resident with recurrent heart failure, lung cancer and advanced CKD may not expect the same benefit from dialysis as the less frail peer.
The project team, led by Keren Ladin PhD, MSc, Assistant Professor, Department of Occupational Therapy and Community Health at Tufts University will examine the comparative effectiveness of two educational strategies: in-person education only versus in-person education plus an interactive web-based decision aid, the Decision-Aid for Renal Therapy (DART), to help improve patients’ knowledge of kidney failure and empower patients and their caregivers to actively participate in care decisions.
“Sometimes, the decision for a patient to start dialysis may fall to a loved one or caregiver who may not be aware of that patient’s wishes and preferences,” said Dr. Ladin. “Our goal is to make it easier for older patients with kidney disease to understand their treatment options and make their wishes known to anyone who may assist in their care.”
The study has three aims, focusing on adults over age 70 with advanced chronic kidney disease and their care partners. First, in a qualitative longitudinal study of 50 patient-care partner pairs and 10 clinicians, the project team will explore treatment goals, priorities for end-of-life care, and decision-making experiences in the context of using DART. Second, in a randomized clinical trial of 400 patient-caregiver pairs followed for up to 18 months, researchers will study whether DART plus in-person education (DART+) compared to in-person education only improves patient-centered outcomes, including decisional conflict, advance care planning, and quality of life. Third, the project team will use these data to study whether DART+ as compared to in-person education improves concordance between patients and care partners. DART can be viewed from home, uses multimedia approaches to communicate information about prognosis and treatment, prompts patients and caregivers to think about their preferences, and records questions to be raised at appointments with their doctors.
“From its inception, our project has reflected the collaboration and perspectives of a diverse set of stakeholders. The study came together to address an important need voiced by patients, families, clinicians, policy makers and the National Kidney Foundation,” added Dr. Ladin. “Together with our diverse team of stakeholders we are hoping that this study can help inform best practices in communicating treatment options to older patients facing dialysis initiation and their loved ones.”
Stakeholders collaborating on the new project include patients and care partners, clinicians, government, National Kidney Foundation (NKF), American Association of Retired Persons (AARP), dialysis companies, social scientists, social workers, community members and other kidney patient advocacy organizations. “Promoting Autonomy and Improving Shared Decision Making for Older Adults with Advanced Kidney Disease,” is funded through a Patient-Centered Outcomes Research Institute (PCORI) Award.
Kidney Disease Facts
30 million American adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history of kidney failure. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end-stage renal disease (kidney failure).
About Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. For more information visit www.pcori.org.
About National Kidney Foundation
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. For more information about NKF visit www.kidney.org.