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Promoting autonomy and improving shared decision making for older adults with advanced kidney disease
Investigator (PI): Ladin, Keren
Performing Organization (PO): (Current): Tufts University, School of Arts and Sciences, Department of Occupational Therapy / (617) 627-5720
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2018
Final Year: 2022
Record Source/Award ID: PCORI/CDR-2017C1-6297
Funding: Total Award Amount: $2,130,558
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Many older patients do not recognize dialysis initiation as a choice and may not be aware that conservative management of kidney failure is an option for them. Adults over 70 years old are the fastest growing segment of the dialysis population, and, although many older patients may have a difficult choice deciding between dialysis and conservative management, they are often poorly informed about the relative harms and benefits of these two strategies, including the effects of both dialysis and conservative management on duration and quality of life. Often, they may not participate actively in decision making, despite dialysis and conservative management having important possible differences in disability, symptom burden, and mortality. 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. Importantly, most patients and caregivers want more information and more decision support. With chronic kidney disease affecting over 20 million Americans, including more than 400,000 receiving dialysis, individualizing kidney failure treatment is a significant public health goal. Our goal is to help older patients and their family care partners make decisions that best reflect their goals and preferences for care towards the end of life. To do this, we examine the comparative effectiveness of two educational strategies: in-person education only versus in-person education + 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. 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. In this proposal, we examine DART's comparative effectiveness for decisional conflict, shared decision making, and communication among patients and their caregivers, and completion of advance care plans. We will pay special attention to patients with limited health literacy. Our 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, we 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, we will study whether DART+ as compared to in-person education only improves patient-centered outcomes, including decisional conflict, advance care planning, and quality of life. Third, we will use these data to study whether DART+ as compared to in-person education improves concordance between patients and care partners. We assembled a diverse group of stakeholders, including kidney patients and care partners, clinicians, government, AARP, and kidney societies, dialysis companies, social scientists, social workers, and community members, to study how DART can help optimize care decisions for thousands of older adults with kidney disease.
MeSH Terms:
  • Aged
  • Caregivers
  • Comparative Effectiveness Research
  • * Decision Making
  • Disabled Persons
  • Health Literacy
  • Humans
  • Kidney Diseases /*therapy
  • Longitudinal Studies
  • Outcome Assessment, Health Care
  • Patient Participation
  • Patient-Centered Care
  • Quality of Life
  • Randomized Controlled Trials as Topic
  • Renal Dialysis /*methods
  • Terminal Care
  • United States
Country: United States
State: Massachusetts
Zip Code: 02155
UI: 20184115
CTgovId: NCT03522740
Project Status: Ongoing