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Putting patients at the center of kidney care transitions
Investigator (PI): Boulware, Leigh E
Performing Organization (PO): (Current): Duke University, School of Medicine, Department of Medicine, Division of General Internal Medicine / (919) 681-4653
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2016
Final Year: 2022
Record Source/Award ID: PCORI/IHS-1409-20967
Funding: Total Award Amount: $5,666,900
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Background: Chronic kidney disease affects over 20 million adults in the United States. Over 115,000 patients develop complete kidney failure each year, devastating them and their families. When kidneys fail, patients need treatments (such as dialysis or a kidney transplant) to prolong their lives. Treatments are very different, and each has its own pros and cons, requiring patients' consideration. Unfortunately, doctors often are unsure of when is the best time to start preparing patients for kidney failure. In many cases, when kidney failure occurs, patients have no idea they are so sick, they have a very poor understanding of their treatments, and they feel blindsided. They also start kidney failure treatment under emergency circumstances, causing them to suffer and receive treatments they don't want. Objective: We will change the health system to improve care patients receive as they transition through earlier stages of kidney disease toward kidney failure. We will study whether these changes lead to patients' improved health and well-being. Methods: We will conduct our study in Geisinger Health System kidney specialty clinics. We will implement patient-centered kidney transitions care, which will (1) give doctors tools to help them recognize when patients should prepare for kidney failure and help them support patients' early and informed treatment decisions; and (2) add a kidney transitions specialist to the health care team to help patients learn about kidney disease, learn self-care skills, make informed decisions, get psychosocial support, and coordinate their care. We will randomly assign four clinics to provide patient-centered kidney transitions care and four to provide their usual care. We will study differences in patients' outcomes among those treated in clinics providing patient-centered kidney transitions care compared with those treated in clinics providing usual care. Patient outcomes: Patients have told us that they want control over their disease transitions and to have the best quality of life possible. We will measure patients' empowerment, confidence with their self-care, their decisions to start self-care treatments for kidney failure, and their hospitalizations. We will also measure whether doctors record patients' treatment preferences in the medical record before patients develop kidney failure. Patient and stakeholder engagement: Our study responds to reports from hundreds of patients and caregivers who want better care. Patients and caregivers from around the country are part of our investigative team, and they will participate in all aspects of our study. We are also engaging key stakeholders in the kidney community, including patients, providers, payers, and regulators. Anticipated impact: If effective, patient-centered kidney transitions care will provide a model of care that can improve the lives of patients with kidney disease and their families across the United States.
MeSH Terms:
  • Continuity of Patient Care
  • Decision Making
  • Humans
  • Kidney Failure, Chronic /psychology
  • /*therapy
  • Medical Records
  • Multicenter Studies as Topic
  • Outcome Assessment (Health Care)
  • Patient Care Team
  • Patient-Centered Care
  • Program Development
  • Program Evaluation
  • Quality of Life
  • Random Allocation
  • Self Care
  • United States
Country: United States
State: North Carolina
Zip Code: 27710
UI: 20153582
Project Status: Ongoing
Record History: ('2017: Project extended to 2020.',) ('2018: Project extended to 2022.',)