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Dialysis Transportation: The Intersection of Transportation and Healthcare (2019)

Chapter: Chapter 2 - Chronic Kidney Disease: Context for the Report

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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 2 - Chronic Kidney Disease: Context for the Report." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Introduction Chronic kidney disease has reached a crisis in the United States—for both medical care and public policy (1). Approximately 30 million people or 15% of U.S. adults have the disease, and increasing numbers of those will likely progress to the disease’s �inal stage when the kidneys fail—end stage renal disease (2, 3). Often referred to by the initials CKD, chronic kidney disease is sometimes called a silent killer: a person can lose up to 90% of kidney function before experiencing any outward symptoms (4, 5). CKD is a signi�icant cause of “premature morbidity and mortality” (6). What does it mean when the kidneys fail? What are the treatment options? What about an arti�icial kidney? This chapter addresses these questions, providing answers that give context to the report. But recognize that this report is not a medical report. It is important, however, to understand the medical terms and issues related to kidney disease in order to understand why and how transportation is important for patients with CKD. Understanding Relevant Terms Relevant terms are de�ined below. De�initions come from websites of the National Kidney Foundation (https://www.kidney.org), Johns Hopkins Medicine (www.hopkinsmedicine.org), American Kidney Fund (www.kidneyfund.org), and the United States Renal Data System (7). Chronic Kidney Disease CKD includes all degrees of decreased kidney function, from damaged-at risk through mild, moderate and severe chronic kidney failure. There are �ive stages of chronic kidney disease, with Stage 5 being the last. Chronic Kidney Disease: Context for the Report Chapter 2 Why do we need kidneys? The kidneys process 120-150 quarts of blood each day, sifting out about one to two quarts of waste products and extra water. One might think of them as advanced blood purifiers. The kidneys are critical because they keep the composition of the blood stable, which lets the body function. www.niddk.nih.gov/health- information/kidney- disease/kidneys-how-they-work Chapter 2—Chronic Kidney Disease: Context for the Report 2.1

End Stage Renal Disease At the last stage of chronic kidney disease—end stage renal disease or ESRD— the kidneys no longer work well enough for a person to survive without treatment. Causes of ESRD Diabetes is the most common cause of ESRD, followed by high blood pressure. Other problems that can cause kidney failure include, among others, autoimmune diseases (e.g., lupus) and genetic diseases (e.g., polycystic kidney disease). Kidney failure may also occur suddenly (acute kidney failure), which may be caused by heart attack, injury, septic shock, or illegal drugs, among other causes. Sudden failure may not always be permanent but may require dialysis. ESRD Prevalence Versus Incidence of ESRD “Prevalence” refers to the number of existing ESRD cases at a point in time, indicating how widespread the disease is, whereas “incidence” refers to new cases of ESRD during a given time period. Incidence may be reported as a count or as a rate. If favorable efforts are made to improve the survival rate of those with ESRD and the incidence rate stays the same, the prevalence of ESRD will increase. However, if medical efforts reduce the incidence rate of ESRD without changing the survival rate of ESRD patients, the prevalence of ESRD will generally decrease. How Many People Have ESRD? More than 700,000 people in the country have ESRD and the number of prevalent patients—those with ESRD—increases by about 20,000 cases each year. From 2000 to 2015, the number of prevalent ESRD patients increased by an alarming 80%. At the end of 2015, almost one-half million prevalent patients were receiving kidney dialysis treatment and, of these, 90% traveled to dialysis facilities for their treatment (2). The number of new cases of ESRD (i.e., incident patients) continues to increase. In 2015, more than 124,000 new cases were reported. While the number of incident patients plateaued for a number of years after rising steadily from 1980 to 2006, since 2012, the number has been rising (2). 2.2 Dialysis Transportation: The Intersection of Transportation and Healthcare

What Are the Treatments for ESRD? There are three treatment options for ESRD: kidney transplantation, dialysis, and palliative care. Kidney Transplantation failure receives a new kidney. Only one healthy kidney is needed to perform the kidney function. The new kidney may come from a living or deceased donor. The surgery typically lasts 3 to 5 hours. If the patient has a compatible and healthy living donor, the transplant may occur within a few weeks or months of diagnosis. If no living-related donor is available, months or years on the waiting list may elapse before a suitable donor organ is available. The average waiting list time is 3 to 5 years (8). Kidney transplantation is considered the preferred treatment choice for many patients and is associated with the highest quality of life and survival. But there is a shortage of organs available for donation. Experience shows that those patients facing ESRD who are motivated and have the wherewithal focus on obtaining a transplant rather than going on dialysis. According to national data, the percentage of patients on a kidney transplant waiting list remained fairly consistent between 2011 and 2014; however, the 2015 data show a slight reduction. Reportedly, this is due primarily to a reduction in the number of inactive waiting list candidates (2). Recent data indicate that there are more than 93,000 people on the kidney transplant waiting list (9). Some patients, however, may not be candidates for a kidney transplant because of older age and severe heart disease, among other reasons. Other patients may get discouraged or not have the �inancial resources to ensure that the various medical tests and screenings are conducted as required to remain on the waiting list. Dialysis Dialysis is the most common treatment for ESRD. Dialysis is a process that �ilters the patient’s blood once the kidneys no longer can, removing waste, salt, and extra water to prevent them from building up in the body; keeping a safe level of certain chemicals in the blood; and helping to control blood pressure. There are two types of dialysis: hemodialysis and peritoneal dialysis. Chapter 2—Chronic Kidney Disease: Context for the Report 2.3 This treatment involves an operation in which a person with kidney

Process for In-center Hemodialysis and Home Dialysis (Source: GAO, Figure 1, used with permission, p. 6, 10) Hemodialysis With hemodialysis (HD), blood is pumped out of the body to a machine (called a hemodialysis machine), and returned to the body by tubes that connect the person to the machine. The machine is used to remove waste, extra chemicals and �luid from the blood. To get the blood into the machine, an access (entrance) into the blood vessels is needed. This is done most of the time by minor surgery to the arm or leg to create an access by joining an artery to a vein under the skin, making a bigger blood vessel called a �istula. HD may be performed at a dialysis facility or at home, but in-facility treatment is by far more common. 2.4 Dialysis Transportation: The Intersection of Transportation and Healthcare

Peritoneal Dialysis In peritoneal dialysis (PD), a catheter is placed within the patient’s abdomen through surgery. A sterile dialysis solution, called dialysate, is put into the abdomen via the catheter, and the solution collects excess �luids and toxins. Once the �iltering process is complete, the excess �luids and toxins are taken out of the body when the patient drains the solution. This is done in cycles— draining and then re�illing the abdomen with the solution. Most patients use a machine that performs the exchanges during the night while asleep. Other patients do manual exchanges during the day. Proper training is needed for peritoneal dialysis. A trained helper may also be used. Peritoneal dialysis is only done at patients’ homes. Palliative Care Palliative care is specialized medical care for people with serious illness, including CKD. Palliative care can help those with CKD by alleviating pain and other symptoms as well as the stress of having a serious illness. In the dialysis context, palliative care means hospice care or may involve a less intensive dialysis schedule. The objective of palliative care is to improve quality of life for the patient and the patient’s family (11). Data from the U.S. Renal Data System (USRDS) indicate that during the �irst year of dialysis, 17% of all deaths are due to withdrawal from dialysis (2). Mortality during the �irst year of dialysis is extremely high. This �inding suggests that many patients could have bene�ited from palliative care before dialysis initiation. Trends in Treatment Hemodialysis is the most common dialysis treatment for patients with ESRD, with the large majority of patients treated at a commercial or medical facility three times each week. According to 2015 national data for incident patients, 87% began treatment with HD, 10% started with PD, and 2.5% had a kidney transplant. Data for prevalent patients as of the end of 2015 show that 63% were receiving HD, 7% were being treated with PD, and 30% had a functioning kidney transplant. Among HD cases, the vast majority used in-center HD, with just 1.9% using home HD (2). While home dialysis is less common, its use, either PD or HD, has been associated with greater patient independence and improved quality of life. Younger, more educated patients and those patients with fewer concurrent medical conditions and greater access to care are more likely to use home dialysis. Chapter 2—Chronic Kidney Disease: Context for the Report 2.5

Transportation for ESRD patients treated at facilities has an over-sized role—312 trips annually—essential for the patients’ survival. Photo courtesy of KFH Group. Changing Trends in Patients' Use of Home Dialysis National data show a decline in the adoption of home dialysis (both PD and HD) from 1988 to 2008: 16% of patients dialyzed at home in 1988 but, over that 20-year period, its use decreased to 7.4% (2). Starting in 2008, this trend changed and patients' use of home dialysis has increased somewhat. Recent data show 8.6% of prevalent patients dialyzing at home (2). Dialysis Providers Dialysis is provided at various facilities, most frequently in commercial centers. Of the commercial centers, two private �irms dominate: Fresenius and DaVita. Together, these two companies operate almost two-thirds of the dialysis facilities in the United States. Fresenius is a German company and DaVita is based in Denver. Data show that these two providers collectively treated about 70% of dialysis patients in the United States (7). The Role of Transportation While all patients with ESRD, including those using home dialysis, require periodic medical appointments, patients who use facility-based dialysis require a far larger number of appointments: three times each week, the patients must travel to their facility for dialysis. This results in the need for a signi�icant number of trips—6 trips to and from the facility each week, 24 trips each month, and 312 trips annually. Transportation for these patients takes on an oversized role and is essential to the survival of these patients. Why Is Facility-Based Dialysis Most Common? Most ESRD patients on dialysis receive dialysis treatment at a facility and not at home. Why is this? The reasons vary, and one should �irst differentiate between incident patients—those newly diagnosed with ESRD—and prevalent patients—the existing patients. 2.6 Dialysis Transportation: The Intersection of Transportation and Healthcare

HD Machines in a Dialysis Facility Photo courtesy of KFH Group. Incident Patients Versus Prevalent Patients When looking at treatment modality, incident (new) patients and prevalent (existing) patients need to be considered separately. Incident patients may have the option of using home dialysis; physicians can discuss dialysis options, including home dialysis if medically recommended, before dialysis is needed. However, prevalent patients who have started hemodialysis in a hospital or in a dialysis facility typically do not change their treatment mode and go on home dialysis for a number of reasons. Importantly, a change to home dialysis requires that someone educate the patient about the available home options and that the patient takes ownership of his or her treatment. Sudden Kidney Failure Versus Gradual Failure Another consideration in treatment modality is whether the patient loses kidney function suddenly due to acute kidney failure or gradually. When a patient loses kidney function suddenly, the patient is typically hospitalized and hemodialysis is the treatment of choice, given that hemodialysis is a faster treatment option than peritoneal dialysis. Note that peritoneal dialysis is possible in such cases—referred to as Acute Start PD—but most hospitals are not equipped to handle this, and most nephrologists are not well versed with the treatment. Once a patient starts hemodialysis, experience shows that the patient stays on hemodialysis, with the majority of patients dialyzing at a facility. Incident Patients with Gradual Kidney Failure Most incident patients lose kidney function gradually. Should home dialysis be a medically appropriate option, the physician can discuss the treatment options with the patient before the kidneys fail completely. For those patients for whom both home and facility dialysis are appropriate, various factors in�luence the choice: • The physician’s recommendation, which is in�luenced by his or her own experience and biases about dialysis modalities. Chapter 2—Chronic Kidney Disease: Context for the Report 2.7

• The patient’s preference and capability to manage home dialysis. o Some patients feel that is safer to have treatment in a medical facility rather than at home. o Home hemodialysis typically requires a family member or other person to help and support the patient’s treatment, although this is changing. o There may not be adequate space at the patient’s home for the supplies needed for home dialysis. • The patient’s socioeconomic status (ESRD patients using in-center dialysis tend to be the more socioeconomically disadvantaged patients). • The “system,” which includes such components as the Medicare payment structure, training locations and training expertise for home dialysis. Starting a patient on peritoneal dialysis (the most common home dialysis method) requires more steps and medical interventions by medical professionals (starting a patient on hemodialysis is medically less involved). In-center hemodialysis is essentially the default form of dialysis. • The distance that a patient lives from a dialysis facility can in�luence the choice; in rural areas where patients live far from a dialysis unit, transportation can in�luence a patient to use home dialysis. Impact of Medicare Payment on Dialysis Treatment Trends Medicare pays for dialysis for most ESRD patients, and its policies have a major in�luence on treatment practices. A recent General Accountability Of�ice (GAO) report examined these policies, assessing the extent to which the policies support the stated goal of the Centers for Medicare and Medicaid (CMS) of promoting home dialysis (10). The GAO report explains how Medicare pays for dialysis treatment, explores reasons behind the decrease in home dialysis from 1988 to 2008, and suggests ways to increase the use of home dialysis. Medicare Payment for Dialysis Treatment Medicare's payment for dialysis consists of two parts. The �irst part of the payment is a single bundled payment to dialysis facilities for providing dialysis treatment and for training patients who choose to use home dialysis. The payment rate is structured so that it is the same for either facility-based or home-based dialysis. The second part of the payment goes to the physician to manage their patients' dialysis care (10). Medicare spending for beneficiaries with ESRD totaled almost $34 billion in 2015, the year with the most recent data. These patients accounted for less than 1% of the Medicare population but required 7.1% of total costs. Combining the cost of $64 billion to treat CKD, total Medicare spending on ESRD and CKD is more than $98 billion annually. (2) 2.8 Dialysis Transportation: The Intersection of Transportation and Healthcare

PD Machine for Home Use Photo courtesy of KFH Group. Why Did Home Dialysis Decrease from 1988 to 2008? The GAO report identi�ied reasons behind the decrease in home dialysis over the 20-year period from 1988 to 2008, a useful effort given CMS's goal of increasing the adoption of home dialysis. The report cited the following: • Increased capacity at dialysis facilities that outpaced the growth in number of dialysis patients: the result was a �inancial incentive to treat patients at facilities so as to use the new capacity. • Changes in the dialysis population: with dialysis patients increasingly older and presenting with comorbidities, there may have been somewhat fewer patients considered medically appropriate for home dialysis. • Medicare's payment for dialysis medications before 2011 may have given a �inancial incentive for in-facility dialysis over home dialysis. This policy changed in 2011, reducing the incentive. • Concerns about the effectiveness of peritoneal dialysis: several reports published in the mid-1990s indicated poorer outcomes for patients dialyzing at home, which may have in�luenced physicians' recommendations to their patients. Recent studies indicated that outcomes for peritoneal dialysis are comparable to those using hemodialysis, and such studies may have contributed to the increases seen in home dialysis since 2008. Home Dialysis Trends Since 2008 As described earlier, the percentage of prevalent ESRD patients using home dialysis, both PD and HD, has increased since 2008, reported at 8.6% in 2015, the year with the most recent data. Further increases are possible: the GAO report cites estimates that 15% to 25% of dialysis patients could realistically be on home dialysis (10). Yet, shortages in the solution needed for peritoneal dialysis hindered further increases in home dialysis for a time. The shortage was �irst announced in August 2014, impacting a slight decrease in home dialysis reported in 2015 (10). The shortage has now been resolved. While peritoneal dialysis is used more frequently for home dialysis, the use of home hemodialysis has shown an increase. Among other factors, it is reported that the home dialysis machines are becoming more user-friendly (12). Chapter 2—Chronic Kidney Disease: Context for the Report 2.9

Impacts of Medicare Payment The GAO report found that Medicare payments to dialysis facilities gave them an overall �inancial incentive to provide dialysis and most likely a �inancial incentive to encourage the use of peritoneal dialysis over the long run. Reportedly, the cost of peritoneal dialysis is generally lower than hemodialysis. Signi�icantly, however, the incentive toward peritoneal dialysis appears limited in the short run. According to the GAO report, "expanding the provision of in- center hemodialysis at a facility generally tends to increase that facility’s Medicare margin." Furthermore, the report states that “... on average, facilities that provided home dialysis could improve their �inancial position in the short term by increasing their provision of in-center hemodialysis" (10). For example, on the one hand, while the average cost for an in-center HD treatment is typically higher than for a PD treatment, a dialysis facility can add an in-center patient without having to purchase another dialysis machine because six to eight patients can use each machine. On the other hand, to add a home patient, the facility must purchase an additional machine, to be used by only that one patient (10). Increasing the Use of Home Dialysis The GAO report concluded that achieving CMS's goal of increased home dialysis requires that Medicare payments to dialysis facilities and physicians align with that goal. This alignment includes a focus on Medicare payment policies to physicians for managing their patients' care. The alignment also includes a review of Medicare's payment for training patients on home dialysis, as reportedly those payments are not adequate. The report further concluded that nephrology training programs provide limited exposure to home dialysis and that this may limit a physician’s willingness to recommend this modality (10). What About an Artificial Kidney? Efforts to create an arti�icial kidney involve developing a small dialysis machine that would be surgically implanted in the patient’s body. A number of such devices are being tested but are more than likely 10 years away from widespread use. Implantation would require open surgery with all the concomitant risks of surgery, including infection, and only selected numbers of ESRD patients would be able to handle such surgery. HD Machine for Home Use Photo courtesy of KFH Group. 2.10 Dialysis Transportation: The Intersection of Transportation and Healthcare

Two universities are working together toward this goal through a national research project known as The Kidney Project. The developers’ device uses microchip filters and living kidney cells that would be powered by a patient’s heart. The researchers are planning for clinical trials in 2018 (13). Chapter 2—Chronic Kidney Disease: Context for the Report 2.11

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Medical literature has identified transportation as a factor in missed and shortened dialysis treatments, which leads to negative health outcomes. These adverse outcomes include, among others, increased hospitalizations because patients do not receive their scheduled treatments. For public transportation agencies, dialysis transportation has become a critical concern as increasing numbers of individuals with end stage renal disease turn to their community’s public transit service for their six trips each week for dialysis.

TCRP Research Report 203: Dialysis Transportation: The Intersection of Transportation and Healthcare responds to major concerns of public transportation agencies about the rising demand and costs to provide kidney dialysis trips and about experiences showing these trips require service more specialized than public transportation is designed to provide.

The report documents the complicated relationship of two different industries—public transportation and healthcare, each with its own perspective and requirements—to highlight problems, identify strategies addressing concerns, and suggest options that may be more appropriate for dialysis transportation.

The following additional materials accompany the report:

• A Supplemental Report that includes, among other material, the literature review and results of the project’s surveys, as well as an assessment of the comprehensive data provided through the U.S. Renal Data System, which underlies the project’s forecasting tool.

• A forecasting tool, which is the community data tool referred to in the report. The Excel forecasting tool enables communities to estimate (1) current and projected demand for public sector trips to kidney dialysis facilities, (2) current and projected costs for this transportation, and (3) potential decreases in the demand for, and cost of, public sector trips if home dialysis increases.

• Info Brief 1 of 2 and Info Brief 2 of 2 capture the key findings of the research project.

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