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Hemodialysis Machine in a Dialysis Facility Photo courtesy of KFH Group. Start at the BeginningâWhat Is Dialysis? Dialysis is the most common treatment for end stage renal disease (ESRD). It involves a process that �ilters the patientâs 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. ESRD is the last stage of chronic kidney disease, at which point the kidneys no longer work well enough for a person to survive without treatment. When this happens the only options beyond dialysis are kidney transplantation or palliative care. Dialysis was initially a temporary treatment for patientsâthe early dialysis machine, developed in the 1940s, treated those whose kidneys had temporarily stopped working because of infection or other reasonsâbut dialysis has become a standard treatment for those with ESRD. The most common type of dialysis treatment is hemodialysis, performed predominately in commercial or medical facilities. With this treatment, the patientâs blood is pumped out of the body and transferred to a dialysis machine that essentially cleans the blood and then returns the blood to the body. How Many People Are Treated with Dialysis? More than 700,000 people in the United States have ESRD and recent years have seen more than 115,000 new cases annually. While a kidney transplant is considered the preferred treatment for many patients, there is a shortage of organs available for transplant. The result is more than 95% of patients newly diagnosed with ESRD start dialysis. Chapter 1 Introduction: Transportation to Dialysis Chapter 1âIntroduction: Transportation to Dialysis 1.1
Photo courtesy of KFH Group. Dialysis can be performed at a patientâs home, but this is not common. Most patients undergo dialysis in commercial facilities or non-pro�it or hospital-based centers. Two private companies dominate the dialysis marketâFresenius and DaVitaâwhich operate almost two-thirds of the facilities in the United States and collectively treat about 70% of dialysis patients. What About Transportation to Dialysis? The many thousands of dialysis patients treated at dialysis facilities across the country require six trips each week: trips to and from their facility either on Mondays, Wednesdays, and Fridays or on Tuesdays, Thursdays and Saturdays. This comes to more than 300 trips each year. Patients without private transportation rely on various public sector modes, including public transitâs specialized services such as Americans with Disabilities Act (ADA) paratransit, Medicaid non-emergency medical transportation (NEMT), and other van services including those supported by the U.S. Department of Veterans Affairs (VA), human service agencies, and nursing homes. Some patients routinely use costly ambulance transportation, even though this is intended only when the patientâs physician determines that this advanced transport mode is medically necessary. The vast majority of individuals undergoing dialysis are not able to use public transportationâs �ixed route services. Many of the patients are elderly and frail, with other compromising medical conditions. Particularly for the return trip from dialysis, patients are weak and often ill. The Challenges of Dialysis Transportation Transportation to dialysis facilities has become a signi�icant concern for public transportation agencies as increasing numbers of individuals with ESRD turn to these agencies for their six trips each week for dialysis. This growing demand for dialysis trips is taxing the operations and funding of public transportation providers in both urban and rural communities. Demand is growing: ⢠Significant numbers of trips dedicated to dialysis. Urban transit agencies report signi�icant numbers of trips dedicated just to dialysis. According to this research projectâs survey of 500+ transit agencies, virtually half 1.2 Dialysis Transportation: The Intersection of Transportation and Healthcare
Photo courtesy of KFH Group. of urban transit agencies reported that dialysis trips are, at a minimum, 10% or more of all specialized trips. Almost one-fourth of urban transit agencies reported even larger proportions of dialysis trips: more than 20% of specialized trips are for dialysis. And more than one-third of rural transit agencies estimated that dialysis trips are at least 10% or more of their specialized transportation trips. Considering the many different trip purposes served by transit agencies, these are signi�icant numbers of trips for just one type of medical condition. ⢠Impacts on other trip needs. The demand for trips for dialysis is impacting transit agenciesâ abilities to meet other trip needs. Over one- third of surveyed transit agencies reported impacts on their service because of demand for dialysis trips. Of these, more than half reported dif�iculty serving other trips during the peak periods for dialysis trip demand. ⢠The shifting of Medicaid trips to ADA paratransit. For some transit agencies, dialysis trip demand is driven, in part, by Medicaid trips that are shifted to transit agenciesâ ADA paratransit services. These transit agencies must �ind additional funds to serve the demand since ADA regulations prohibit any capacity constraints. This means, among other requirements, that trips from eligible riders cannot be denied, including trips for dialysis. There are operational challenges: ⢠Scheduling problems. Particularly for return trips after dialysis, scheduling is a major problem as patients are often not ready when the vehicle arrives for the scheduled trip home. Typically, this is because the patients are not yet medically stable after treatment or there may have been a delay in starting treatment or during treatment. Transportation providers can only wait a short time, given a schedule to maintain with other passengers on-board. Providers must then re-route the vehicle later to come back for the patient or �ind another vehicle that has time and capacity in the schedule to serve the trip. Chapter 1âIntroduction: Transportation to Dialysis 1.3
⢠Changing treatment days and times. Transit agencies must deal with dialysis ridersâ changing treatment days and times. Dialysis facilities sometimes change the days and times of their patientsâ treatments for varying reasons, in some cases with little notice. This forces transportation agencies to revise their driversâ schedules, often in real time. Sometimes patients may be sent to the hospital because of complications, with no notice to the transportation agency, and the patientsâ trips become no-shows. ⢠Extra care and support for dialysis patients. Typically for the trip home, dialysis patients require extra care and support as treatment leaves them weak and depleted. Such extra assistance can be beyond that expected of a public transportation driver. ⢠Constraints of ADA paratransit. Transit agencies providing ADA paratransit must meet regulations established by the federal law, which limit the attention, support and trip �lexibility needed by dialysis patients. ADA regulations, among other things, prohibit the transit agency from giving priority to any trip typeâeven life-sustaining dialysis trips. Regulations require high standards for trip timeliness, so vehicles can wait only a short time for riders in order to meet the overall timeliness standard. Moreover, the shared ride nature of the serviceâcommon to all specialized providers not only ADA paratransitâmeans the trips are longer. This is a problem for patients who are weak and often ill after dialysis treatment. Funding is a constant challenge for public transportation agencies: ⢠Increased operating costs. Dialysis trips are requiring increased operating costs to meet demand. Some transit agencies reported earlier start or end times necessitated by new dialysis treatment shifts. Because of increasing numbers of people with ESRD starting dialysis, facilities are adding new treatment shifts, for example, a shift starting in the very early morning or a shift ending mid-evening. Transit agencies then need to start operations earlier as well as end later to meet the new demand for dialysis trips. ⢠Increased cost per trip. The extra time and effort required for dialysis trips translate to higher per trip costs. ⢠Decreased productivity. The limited grouping of dialysis tripsâbecause patients have different treatment times and dispersed trip originsâ lowers the productivity of transit agencies. Long travel times to dialysis facilities also serve to limit productivity. Travel times can be long because physicians or dialysis facilities may not schedule patients at the 1.4 Dialysis Transportation: The Intersection of Transportation and Healthcare
Entrance to Dialysis Clinic Photo courtesy of KFH Group. facility closest to where the patients live. In rural areas, the distance to even the closest dialysis facility may be long. Transportation Problems Impact Patients and Their Health It is not just transportation agencies that face challenges with dialysis transportation. Patients as well as social workers at dialysis facilities are impacted. And, signi�icantly, the health of dialysis patients is also impacted. Patients and social workers complain about the unreliability of dialysis transportation: vehicles are lateâlate dropping off patients at their treatment facility and late picking up patients after treatment; vehicles never comeâthe transportation provider cancels the trip or is a no-show. The unreliability is stressful. Patients are anxious about transportationâthey worry about missing their trip home, as the vehicle waits only a short time, so they end dialysis treatment early so they will not miss their ride. The social workers are also stressedâand frustratedâabout transportation. The research projectâs survey of nephrology social workers found that social workers spend hours dealing with the transportation problems of their patientsâ time and effort that detract from their primary responsibilities. Perhaps most critical is the impact of transportation problems on the health of dialysis patients. Medical literature has speci�ically identi�ied transportation as a factor in missed and shortened dialysis treatments which then leads to negative health outcomes for patients. These negative outcomes include, among others, increased hospitalizations because patients do not receive their scheduled treatments. Intersection of Transportation and Healthcare This research project has examined the intersection of transportation and healthcare, speci�ically for dialysis patients, and this report documents the �indings. Chapter 1âIntroduction: Transportation to Dialysis 1.5
While a focus has been public transportation given the projectâs sponsor, the project has speci�ically included the healthcare perspectiveâwith information from medical literature, survey data from dialysis patients and nephrology social workers, and research on initiatives on the healthcare side that directly or indirectly may address concerns with dialysis transportation. It is important to state that public transportation providers recognize that dialysis trips are critical and life-sustaining for their riders. Many providers have implemented efforts to better serve those trips (a sample of those efforts is described later in this report). But it is also important to point out the disconnects identi�ied in this research projectâcon�licts at the intersection of public transportation and healthcare for those on dialysis: ⢠Transit agencies report that dialysis riders are not ready for their return trip. Social workers report patients have long waits for their return trips. ⢠Transit agencies report that they educate dialysis facilities about what they can and cannot do as public transit providers. But social workers appear not to understand the constraints and legal framework of ADA paratransit, which, for example, prohibits any trip purpose prioritization. ⢠Social workers report that they consider patientsâ transportation needs when scheduling dialysis treatment. Transit agencies report changing patient schedules and a lack of coordination with dialysis facilities for transportation. ⢠Problems with transportation are a major stress for patients. Healthcare Quality of Life surveys of dialysis patients address biological symptoms but do not include transportation. ⢠The shifting of Medicaid non-emergency trips to public transit agenciesâ ADA paratransit without coordination with Medicaid on funding is a concern for public transit. Yet federal guidance through the Centers for Medicare and Medicaid Services (CMS) from 1998 and more recent language from a CMS ruling implementing the De�icit Reduction Act of 2005 allow Medicaid agencies to contribute to the full cost of trips with a ânegotiated rateâ (more than the fare). In practice, such coordination is not common. Perhaps shorthand for the disconnects is the terminology used for individuals undergoing dialysis: public transportation providers refer to those whom they 1.6 Dialysis Transportation: The Intersection of Transportation and Healthcare
serve as riders or passengers or customers and sometime clients. But the healthcare industry knows these individuals as patients. Objectives and Background of the Research The research projectâs stated objectives, as set out in the project statement for the study, are twofold: 1. To quantify the current and projected demand and costs associated with transportation for kidney dialysis in the United States. 2. To identify current effective practices and new strategies for funding and providing transportation for dialysis. The research, conducted over an 18-month period, involved a literature review; three surveys; information, data, and consultation with the two healthcare professionals on the research team; development of a forecasting tool to estimate needs and costs for dialysis transportation; and follow-up with selected public transit providers to document efforts to provide dialysis trips more effectively. The TCRP Research Panel overseeing the research project asked the study team to additionally research initiatives being conducted on the healthcare side that may impact the need for dialysis transportation, such as efforts to increase patientsâ use of home dialysis, that in, turn lessens the need for transportation. The background research efforts of the team are provided as a supplemental report that can be found on the Transportation Research Board (TRB) webpage by searching for TCRP Research Report 203. The supplemental report includes the literature review and results of the projectâs surveys as well as an assessment of the comprehensive data provided through the U.S. Renal Data System that underlies the projectâs forecasting tool. The TRB webpage for the research report also includes a link to the forecasting tool, referred to as the community data tool in the report. Also located on the TRB webpage are two very short Info Briefs, which capture the key �indings of the research project. These Info Briefs are additionally included in the back of this report. Chapter 1âIntroduction: Transportation to Dialysis 1.7
What Is In This Report? Following this introductory chapter, the report contains �ive additional chapters. Chapter 2, Chronic Kidney Disease: Context for the Report, provides a frame of reference for the rest of the report, listing terms and de�initions central to understanding kidney disease and dialysis. This chapter also identi�ies treatment options for ESRD and trends in treatment. Chapter 3, Transportation to Dialysis: Modes and Money, describes transportation modes used by dialysis patients to get to and from dialysis and identi�ies funding that supports dialysis transportation. This chapter also explains the disconnect between public transportationâs ADA paratransit service and Medicaid NEMT. Chapter 4, Initiatives on the Healthcare Side, presents material that the research projectâs panel requested to augment the project. The chapter describes a number of projects, pilots and services initiated through the healthcare industry that help inform the topic of dialysis transportation. For example, this chapter identi�ies a new Medicare program that aims to prevent the onset of diabetes, which is the most common cause of ESRD. Chapter 5, Demand and Costs for Dialysis Transportation: A Data Tool, describes the community data tool that allows communities to estimate the current and projected number of residents in their community who travel to dialysis centers, the unconstrained public sector trips needed by these patients, and the cost of the public sector trips. Chapter 6, Initiatives on the Transportation Side, presents a range of operational policies, practices, and strategies that public transportation agencies have implemented to better serve dialysis trips. The transportation agency efforts presented in Chapter 6 are noteworthy but do not solve the challenges of dialysis transportation. One �inding of this research project is that public transportation is not an appropriate service for the many dialysis trips that require care more specialized than public transportation is designed to provide. The medical community and speci�ically dialysis facilities are now allowed to participate directly in funding and providing patient transportation through revisions to federal law that restricted such participation in the past, and their involvementâwith care tailored to their patientsâwould help improve dialysis transportation. Their involvement would also help ensure better health outcomes for their patients. 1.8 Dialysis Transportation: The Intersection of Transportation and Healthcare