This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Kidney disease affects more than 30 million adults in the United States. Each year, more than 118,000 of these people develop kidney failure, which can occur with little warning. Many people whose kidneys fail don’t know how sick they are and don’t understand their treatment options. They feel caught off guard and don’t have time to make thoughtful, informed decisions about their own care.
Treatments for kidney failure, such as dialysis or a kidney transplant, can lengthen life. However, each treatment has its own benefits and risks. Knowing about these treatment options and their benefits and risks can help patients choose the treatment that is right for them before kidney failure happens. Doctors can help patients make treatment decisions in earlier stages of kidney disease. However, doctors are often unsure about the best time to have this talk.
In this study, the research team is helping doctors prepare patients for kidney failure. The team is also adding a kidney transitions specialist to the healthcare team. The research team wants to know if taking these steps can help patients make treatment decisions that are right for them before kidney failure occurs.
Who can this research help?
Results from this study can help kidney care clinic directors and payers decide whether and how to prepare patients with advanced kidney disease for kidney failure.
What is the research team doing?
The research team is enrolling 600 adult patients with advanced kidney disease who receive care in eight kidney specialty clinics each year for four years. The team is assigning four clinics by chance to provide patient-centered care and four clinics to provide their usual kidney disease care. Clinics assigned to offer patient-centered care give doctors tools that help them decide when patients should prepare for kidney failure and help doctors support patients in making earlier treatment decisions. These clinics also have a kidney transitions specialist who teaches patients about kidney disease and self-care, helps patients make informed decisions, and coordinates patient care.
The research team is asking patients whether they feel in control of their treatment decisions. The team is also looking at how often patients go to the hospital and whether doctors record patients’ treatment preferences for kidney care in patients’ medical records before patients reach kidney failure.
Patients, caregivers, providers, payers, and others from around the United States help develop and oversee the study. They also help analyze study results.