Published July 19, 2019
Bringing a Patient-Centered Approach to Kidney Disease Care to the Forefront: Three Reasons Why it Matters
Kidney disease care in America is long overdue for an overhaul.
More than 37 million Americans suffer from chronic kidney disease (CKD). Of those, more than 726,000 have end-stage renal disease (ESRD), or kidney failure, and need dialysis treatment or an organ transplant to survive. Kidney disease ranks as the ninth leading cause of death in the United States and approximately 100,000 people are on the list waiting to receive a transplant.
Current treatment options for patients with advanced kidney disease include hemodialysis, peritoneal dialysis, kidney transplant, and conservative kidney management (CKM). CKM is a treatment approach that forgoes dialysis and focuses on management of blood pressure and treatment of symptoms. Due to various factors, such as a lack of patient education and clinician perceptions, many patients opt for hemodialysis even when that treatment option does not increase life expectancy or quality of life such in older frail patients or those with other advanced diseases. Often, patients who would benefit from peritoneal dialysis or CKM aren’t made aware such options exist.
On July 10, 2019, an Executive Order to launch Advancing American Kidney Health was signed. The new initiative from the Department of Health and Human Services (HHS) aims to upend how kidney disease is treated, increase treatment innovations, and improve the organ donation systems in the U.S. The overall goals are to improve patient outcomes and lives by expanding treatment options and reducing healthcare costs.
Why it Matters
This call to action represents a patient-centered approach that is much-needed to improve kidney health in the United States. Here are three reasons why it matters:
It Reduces Barriers to Optimal Outcomes
With a goal to reduce the risk of kidney failure in people with kidney disease, the initiative is promoting better preventive measures, earlier detection, and individualized treatments to slow progression.
Patients on dialysis have a poor prognosis – about one in five die within a year of initiation and half within five years. Infections are a serious adverse event related to dialysis, leading to more hospitalizations, higher mortality, and decreased access to other treatment options. While higher survival rates are reported among kidney patients who receive home dialysis compared to those receiving in-center dialysis, only 2 percent use home dialysis. Kidney transplantation is associated with better outcomes than dialysis. Unfortunately, there is a shortage of available kidneys.
This initiative sets out to encourage evidence-based interventions to reduce complications resulting from dialysis and incentivize alternatives to costly in-center dialysis, including more opportunities for home dialysis and kidney transplants.
It Promotes Shared Decision Making
Shared decision making (SDM) is a cornerstone of patient-centered care. It enhances efforts to provide medical care that aligns with patient goals, values and preferences. It also improves patient safety for serious illness care. For individuals with advanced kidney disease, SDM is a crucial part of advance care planning, an ongoing process used to document patients’ preferences in the event they lose decision-making capacity. A critical ingredient to SDM is the use of patient decision aids to explore potential options for medical care like ACP Decisions’ “Dialysis for Patients 75 & Older” video.
There are several measures being taken by HHS and the Centers for Medicare and Medicaid (CMS) that will foster SDM:
- Launch of a public awareness campaign to increase knowledge of chronic kidney disease;
- Inform development of new kidney disease treatments that align with patient preferences, including alternatives to dialysis, through patient surveys being developed by the FDA; &
- Introduction of innovative payment models that incentivize identification and treatment of at-risk populations earlier in disease development and increase education and understanding of the disease so that beneficiaries can actively participate in SDM.
It Empowers Patients
The new initiative lays out many actions that will empower kidney disease patients to improve their health and their lives, including:
- More care choices that will improve quality of life;
- Innovations aimed at preventing and better managing kidney disease;
- Greater access to information about kidney disease prevention, detection, diagnosis, and treatment;
- Access to more affordable treatment options for ESRD;
- Better care coordination;
- Development of evidence-based interventions that lead to safer and more effective care;
- Improved access to care during and after disasters;
- Continued research work through NIH to advance precision medicine for kidney disease; &
- Increasing the supply of transplantable kidneys and expanding support for living donors.
Where to Find Additional Information
- Executive Order on Advancing American Kidney Health
- HHS Press Release: HHS Launches President Trump’s ‘Advancing American Kidney Health’ Initiative (7/10/19)
- Advancing American Kidney Health Paper
- CMS Fact Sheet: Proposed ESRD Treatment Choices (ETC) Mandatory Model
- CMS Fact Sheet: Kidney Care First (KCF) and Comprehensive Kidney Care Contracting (CKCC) Models
ACP Decisions is dedicated to empowering patients, families and healthcare providers in advance care planning. Our extensive library of evidence-based video decision aids includes education about care options for patients with specific advanced diseases, including advanced renal disease. If you’d like to learn more or sign up for our monthly newsletter, please contact us!