Reducing the Burden of Kidney Disease
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
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March is National Kidney Month, a time when national organizations focus attention on kidney health. An estimated 26 million Americans have kidney disease, although many don’t know it because there are often few symptoms until kidney function begins to fail. Kidney disease is currently the ninth leading cause of death in the United States, killing more people each year than breast or prostate cancer.
Our kidneys are vital organs that constantly filter the blood, help regulate blood pressure, and stimulate red blood cell production. Simple blood and urine tests can check whether kidneys are working properly, and early treatment can slow or prevent the progression of disease. Once kidneys fail, a patient needs either a transplant or dialysis to prevent the buildup of wastes and extra fluid in the body. In the most common type of dialysis, called hemodialysis, a patient visits a dialysis facility for three to four hours three times a week. Dialysis requires major adjustments in patients’ lives.
Diabetes and high blood pressure are the leading causes of kidney disease. As the population gets older and rates of diabetes go up, kidney disease is on the rise. Nearly 10 times as many patients are now being treated for kidney failure as in 1980.
PCORI is funding a wide variety of studies to learn how to reduce the burden of kidney disease on patients and those who care for them. We are working in conjunction with patient organizations, including the National Kidney Foundation (NKF), which has helped recruit patients for one of the studies we fund. NKF’s Tonya Saffer says that the foundation is pleased to see PCORI funding research on kidney disease, and especially appreciates our focus on directly involving patients and patient organizations in preparing proposals and carrying out projects.
Delivering Care More Effectively
African Americans, Hispanics, Asians, Pacific Islanders, and American Indians are at increased risk of kidney disease. As a step toward reducing this disparity in disease burden, PCORI is funding a study in New Mexico that aims to delay the disease and reduce the number of people whose condition eventually requires dialysis. The study will test a program in which indigenous, Zuni-speaking community health workers bring care into patients’ homes, and patients receive intensive support to encourage adherence to medical treatment and healthy lifestyle changes.
Patients with advanced kidney disease often have other chronic diseases that require complex care, and so they may make frequent emergency room visits and require hospitalizations. One approach to reducing this burden is a patient-centered medical home model, in which patients receive ongoing care from a multispecialty provider team during their regularly scheduled dialysis visits. PCORI is funding a study in Illinois to assess whether this model would identify problems sooner and reduce complications, compared with usual care, as well as improving patients’ quality of life and decreasing caregiver stress.
Depression affects almost one-quarter of patients receiving treatment in dialysis facilities and hampers their ability to make the required adjustments in their lives. Yet many doctors are uncertain about how best to manage depression, and many dialysis patients are reluctant to pursue depression treatment. One study being conducted in Washington State, Texas, and New Mexico aims to test whether, among dialysis patients with depression, a specially designed interview results in more patients accepting depression treatment. The study will also assess whether psychotherapy or drug therapy most effectively reduces depression symptoms among these patients.
Helping Patients and Caregivers Make Decisions
The goal of a Pennsylvania study is to engage patients with advanced kidney disease and their family members in a patient-centered peer-mentorship program to help them make decisions regarding treatment choices. Patients with advanced kidney disease and their caregivers will receive either face-to-face peer mentoring, online peer mentoring, or information only. The researchers will test the effectiveness of peer mentoring on patients’ quality of life and engagement in their own care, as well as caregivers’ feeling of burden. Another study in Michigan is examining educational tools for helping people with advanced kidney disease and their caregivers choose between hemodialysis and a form of dialysis that can be conducted in their own homes (for a Research in Action feature, click here).
As most patients receiving dialysis are elderly and have diabetes and other life-threatening diseases, more than one-fifth of them die each year, despite the effectiveness of the treatment. Many don’t receive hospice services and the opportunity to make personal choices about end-of-life care. A study in Massachusetts will test whether an intervention that targets communication deficiencies can alter end-of-life outcomes by matching patient preferences with treatments.
Improving Treatment of Rare Kidney Diseases
While therapies are well established for the most common kidney disease, there are less common conditions that can lead to kidney failure. People suffering from rare kidney diseases may experience significant delays in diagnosis, limited options for treatment, and poorly coordinated care. The NephCure Kidney Network, which is part of PCORnet, the National Patient-Centered Clinical Research Network, is developing a data repository on three rare diseases, together called primary nephrotic syndrome. The goal is to create a rich database of longitudinal clinical and patient-reported outcomes data to facilitate efficient, high-impact comparative clinical effectiveness research.
By funding these and other research studies, PCORI seeks to provide evidence-based information useful to patients with kidney disease and their caregivers to make choices regarding treatment and how to experience the best-possible quality of life.