The Complex Patchwork of Transportation for In-Center Hemodialysis

Abstract

Reliable transportation is an important determinant of access to health care and health outcomes that carries particular significance for people with ESKD. In the United States, there are almost half a million patients receiving treatment with in-center dialysis, translating into more than 70 million roundtrips to dialysis centers annually. Difficulty with transportation can interfere with patients' quality of life and contribute to missed or shortened dialysis treatments, increasing their risk for hospitalization. Medicare, the principal payer for dialysis in this country, has not traditionally provided coverage for nonemergency medical transportation, placing the burden of traveling to and from the dialysis center on patients and families and a range of other private and public entities that were not designed and are poorly equipped for this purpose. Here, we review the relationship between access to reliable transportation and health outcomes such as missed and shortened dialysis treatments, hospitalizations, and quality of life. We also describe current approaches to the delivery of transportation for patients receiving in-center hemodialysis, highlighting potential opportunities for improvement.

Introduction

There is growing recognition within the medical community of the significant role of social and environmental factors operating outside health systems in shaping patients' access to care, experiences of illness and care, and health outcomes. The World Health Organization estimates that social risk factors affect up to 80% of all health outcomes.¹ Limited access to transportation has been associated with missed appointments and substandard medical care in a variety of different populations.² One recent study among older Medicare beneficiaries suggested that emergency room visits and hospital admissions were more strongly associated with access to transportation than with a range of other important social risk factors for adverse health outcomes including food insecurity, financial strain, and housing insecurity.³

Because most hemodialysis treatments in the United States are delivered within dialysis facilities and thrice weekly,⁴ access to reliable transportation is an especially important consideration for the dialysis population. In the United States, almost 500,000 patients are currently receiving in-center dialysis, which translates into upwards of 70 million roundtrips to dialysis centers annually.⁵ Despite the significant effect on patients' interactions with the health system and their experiences of illness and care, transportation to and from dialysis centers has received surprisingly little attention in the medical literature.^6–11

Effect of Transportation on Health Outcomes

There are relatively few recent studies of dialysis transportation,¹¹ and many previous studies have focused on single centers or defined geographic areas.^6–11 Earlier studies demonstrated that limited access to reliable transportation to and from dialysis treatments is associated with missed or shortened dialysis sessions as well as a range of other adverse health outcomes. The results of a 2004 survey conducted among social workers at dialysis facilities in South Carolina suggested that transportation issues accounted for approximately 4.5 missed treatments a month at the facility level.¹⁰ Similarly, an analysis of over 2000 instances where dialysis treatments were cut short at a single facility in North Carolina identified transportation issues (22%) as second only to life tasks (33%) as the most common reason for missed dialysis treatments.⁷ In another survey of more than 200 patients at a single dialysis facility over a 12-month period from April 1990 to March 1991, 7.7% of shortened treatments were attributed to difficulties with transportation.⁶ Traveling to and from dialysis treatments is especially challenging for patients with longer travel times. Moist et al. stratified a large international cohort of more than 20,000 patients receiving maintenance dialysis into quartiles of travel time, ranging from ≤15 to ≥60 minutes.⁸ The percentage of patients who reported either missing or shortening dialysis treatments increased linearly from the lowest to the highest quartile of travel time. Missed and shortened dialysis treatments are in turn associated with an increased risk of hospitalization. Chan et al. examined missed treatments and hospitalizations among a large cohort of nearly 200,000 patients receiving dialysis at Fresenius-owned facilities in the United States over a 4-year period from 2005 to 2009. On the basis of their analyses, the authors estimated that eliminating missed and shortened treatments due to transportation barriers could help to avoid 0.8 days in the hospital per patient per year among members of the dialysis population.⁹

The burden of traveling to and from dialysis treatments was also negatively associated with patients' physical and mental well-being. In the aforementioned study, Moist et al. found that patients with longer travel times had significantly lower mental and physical component summary scores on the Short Form 36 Health Survey. There were also statistically significant differences across quartiles of travel time in scores on subcomponents of a variety of other subscales.⁸ Similarly, among 835 patients enrolled in the Japanese Dialysis Outcomes and Practice Patterns Study, Yazawa et al. found that those who were dependent on others for transportation had significantly lower physical and mental component summary scores than patients who were able to drive, walk or cycle, or take public transportation to their dialysis treatments.¹¹ A summary of existing literature on the health effects of transportation barriers is provided in Table 1.

Table 1.

Summary of existing literature on transportation and health outcomes among patients receiving in-center dialysis

Authors	Study Design	Year of Publication, Setting	Summary of Findings	Limitations
Iacono SA	Survey of 123 patients and 16 social workers at multiple dialysis centers in South Carolina	2004, South Carolina	• 39% of patients reported missing a dialysis treatment because of a mistake made by their transportation provider • Social workers reported that there were an average of 4.5 missed treatments each month at each dialysis center that could be attributed to transportation issues • Only 25% of social workers believed there were adequate transportation resources for their patients	• Small survey limited to one state • Subject to recall bias • Cannot infer causality from observational studies
Chan KE et al.	Analysis of 182,536 Medicare beneficiaries receiving dialysis at 1463 Fresenius clinics	2014, North America	• Authors observed excess hospital ER, and ICU-CCU usage associated with patients who missed their scheduled hemodialysis treatment • Use of public transportation was associated with missed treatments	• Observational study and covariates may not have adequately adjusted for severity of illness • Cannot infer causality from observational studies
Gordon EJ et al.	Survey of 168 patients across 29 dialysis facilities	2003, Northeastern Ohio	• 38% of patients reported skipping at least one treatment • The most common reasons for skipping dialysis were life tasks (33%) followed by transportation (22%) • 14% of African American patients had transportation problems listed as a reason vs. none of the White patients	• Limited geographic scope • Subject to recall bias • Cannot infer causality from observational studies
Rocco MV Burkart JM	Analysis of 2108 early treatment sign offs at a single dialysis center	1993, North Carolina	• From April 1990 to March 1991, early dialysis sign offs occurred in approximately 7% of treatments, and no shows occurred in approximately 1% of treatments • Problems with transportation accounted for 7.7% of early sign offs	• Limited geographic and institutional scope • Transportation issues were defined in vague terms because these were based on retrospective chart analyses of nursing notes
Moist LM et al.	Analysis of questionnaire responses of 20,994 participants in the DOPPS	2008, United States, France, Germany, Italy, Japan, Spain, United Kingdom	• Longer travel time to dialysis was associated with lower health-related quality of life • Problems with transportation were more strongly associated with skipping or shortening sessions among patients with longer travel times	• Travel time was self-reported • Cannot infer causality from observational studies
Yazawa M et al.	Analysis of questionnaire responses of 835 DOPPS patients in Japan	2020, Japan	• SF-12 physical and mental composite scores were significantly lower in patients who relied on others for transportation	• Study cohort limited to Japanese patients • Cannot infer causality from observational studies

Emergency room, ER; intensive care unit-cardiac care unit, ICU-CCU. DOPPS, Dialysis Outcomes and Practices Patterns Study.

Payment for Nonemergency Transportation for Dialysis

Barriers to dialysis transportation exist at both the individual and community level.¹² Among patients who must rely on public transportation services, there can be substantial geographic variation—both across states and over smaller geographic areas—in the level and quality of public support for transportation to and from dialysis centers. In much of North America, the responsibility for travel to and from dialysis treatments falls largely to patients and their families and a range of other public and private agencies that are poorly equipped to meet the substantial transportation needs of members of this population.^13–15 In the United States, the Medicare ESKD program, which is the principal payer for maintenance dialysis services in the United States, has not traditionally paid for routine transportation to and from dialysis. According to one survey conducted among 262 nephrology social workers from across the United States, approximately half of patients who rely on in-center hemodialysis do not have their own means of transportation to and from dialysis centers.¹⁶

Unlike Medicare, state Medicaid programs are legally required to provide coverage for nonemergency medical transportation (NEMT) for eligible recipients. However, only 8.9% of prevalent Medicare beneficiaries with ESKD undergoing maintenance dialysis are dually eligible for Medicaid services.^5,17 In addition, criteria for accessing NEMT under Medicaid can be quite restrictive.⁷ For example, to qualify for the NEMT benefit, Medicaid beneficiaries are required to seek care from the nearest qualified provider and demonstrate that they have no other source of transportation.^17–19 Furthermore, how state Medicaid Programs operationalize these requirements is extremely variable. For example, definitions of lacking other means of transportation can variously include not owning a car, not having a driver's license, or having a physical disability that interferes with arranging transportation. Some states also limit services on the basis of medical necessity by requiring prior authorization or limiting trip mileage or the number of allowed trips.¹⁷ For example, the Indiana Medicaid program limits the NEMT benefit to 20 trips over a 12-month period,¹⁷ which falls far short of what would be needed to meet the transportation needs of patients receiving thrice-weekly in-center hemodialysis. State Medicaid programs also use a variety of different approaches to transportation service delivery. Some states deliver NEMT directly through fee-for-service reimbursements while others use a mix of brokerage, direct delivery, and public transit vouchers.^18,20 Brokers are third-party private companies or state agencies that help to coordinate transactions between Medicaid NEMT and transportation companies by confirming patient eligibility and scheduling rides in return for a capitated payment.¹⁹ NEMT ride modalities vary on the basis of the level of service required by the beneficiary but usually involve a shared ride service that needs to be arranged in advance.²⁰

Paratransit services mandated by the Americans with Disabilities Act (ADA) serve as another important source of transportation to and from dialysis. ADA paratransit may be thought of as a form of public transportation which is provided through transit agencies and funded largely through local sales taxes and a combination of state-level and federal-level grants.^21,22 Under the ADA, transit agencies that operate a fixed-route bus or rail service are mandated to provide additional, complementary paratransit services to those whose disabilities preclude them from using the fixed route system.²³ Similar to Medicaid NEMT ride services, ADA paratransit typically provides a curb-to-curb service that must typically be scheduled at least a day in advance and often serves multiple different customers with a range of different pickup and drop off locations.²³ People with ESKD are eligible for ADA paratransit in most localities, regardless of whether they are covered by Medicaid.¹⁶

While Medicaid NEMT and ADA paratransit can overlap and interact in a variety of different ways, there is no historical precedent or common template for collaboration between these two sets of services.¹⁶ In certain states, eligibility for ADA paratransit may disqualify otherwise eligible patients from receiving NEMT under their state Medicaid program. Even among those who do qualify for Medicaid, NEMT program staff and private brokers have been known to steer patients toward ADA paratransit, especially when NEMT is coordinated through a brokerage operating on a capitated payment model.^16,18,24 While Medicaid does sometimes reimburse ADA paratransit for transporting Medicaid beneficiaries, policies around this kind of collaboration are inconsistent.¹⁶ Several other entities also offer limited coverage for transportation including the American Kidney Fund and the National Kidney Foundation.¹⁶ However, under the Anti-Kickback Enforcement Act of 1986, dialysis facilities themselves are for the most part precluded from offering transportation to and from dialysis treatments.²⁵

Discriminatory housing practices, socioeconomic displacement, and federal interstate highway construction have created racially, economically, and geographically segregated communities in many parts of the United States.^26–28 Historically marginalized groups, including those with low-income, minoritized racial-ethnic groups, and dwelling in remote rural areas, often have disproportionately high rates of ESKD and face greater barriers to optimal treatment for kidney failure.^5,29,30 While evidence is limited, it follows that NEMT benefits and state-level and local-level eligibility for transportation services may disproportionately affect access and quality of care for members of these marginalized groups receiving dialysis. Patients with kidney disease living in remote rural communities, for example, face major transportation barriers that likely drive late referrals to specialist nephrologist care and forced relocation and financial hardship at dialysis onset.^31,32 Unmet transportation needs may also contribute to the disproportionately low rates of pre-ESKD nephrology care among patients who are uninsured or enrolled in Medicaid⁵ and those of Black race and Hispanic ethnicity.^32,33 In an analysis of Medicaid enrollees in 32 US states (FY2019), American Indian and Alaska Native enrollees accounted for the largest share of NEMT ride days nationally.³⁴ The lack of discernable patterns in NEMT use by race and ethnicity in this study may reflect high variation in the patterns of residential segregation and in the availability of safe and affordable transportation across US states.³⁵ More work is clearly needed to understand the contribution of current approaches to NEMT to and from dialysis treatments to health disparities within the in-center dialysis population.

Transportation Companies, Social Worker, and Patient Perspectives

Coordinating transportation to and from dialysis requires extensive collaboration and coordination between social workers, transportation companies, and patients. The report entitled “Dialysis Transportation: The Intersection of Transportation and Healthcare” published by the National Academies Press as part of a collaborative effort between the National Academies of Sciences, Engineering, and Medicine; the Transportation Research Board; and Transit Cooperative Research Program and several individual investigators, speaks to the many tensions that can arise between the various stakeholders in this process. Among almost 300 social workers from across the United States were interviewed for this project, many reported that arranging rides to and from dialysis sessions was time-consuming and labor-intensive. As one social worker said: “It is not uncommon that we spend hours a week dealing with problematic transportation issues, which sometimes seems that our position is more transportation manager than social worker with a Master's degree”.¹⁶ Most of those surveyed also reported that they had known patients to miss (72%) and shorten (84%) their dialysis treatments because of the inflexible and unreliable nature of prearranged transportation services. The National Academies Press report also contains the results of a survey conducted among staff at 500 transportation companies. These staff members reported that scheduling trips for dialysis is challenging because patients are frequently not ready for a prescheduled pickup time and require extra attention on the way home from dialysis that drivers are not trained to provide. Transit agency staff also reported having to educate dialysis facility staff about what they can and cannot do as transit providers, noting that social workers often fail to grasp these constraints and the legal framework within which transit agencies operate. Patients reported similar frustrations. In one survey of 123 patients receiving in-center hemodialysis, 35% reported difficulty scheduling trips, 21% reported conflicts or arguments with drivers, 19% reported late service, and 14% reported missed trips.¹⁰

Alternative Payment Models for Medicare Beneficiaries

Newer approaches to financing care for Medicare beneficiaries with ESKD care seem to recognize the importance of transportation in shaping the care and health outcomes of patients receiving maintenance dialysis. Since 2021, patients with ESKD have been allowed to enroll in Medicare Advantage plans. Some of these cover up to 75 one-way rides per year, although this falls far short of the transportation needs of the typical patient receiving in-center dialysis.^36,37 Between 2015 and 2021, the Center for Medicaid and Medicare Services launched the Comprehensive ESKD Care model, an alternative value-based kidney care and payment model. The Comprehensive ESKD Care model included waivers for extra services beyond those covered by traditional Medicare payment models, including waivers of up to $500 per member per year for transportation to and from dialysis. Program evaluation suggested that despite the limited scope of this benefit, transportation waivers were among the most popular among program enrollees.^38,39

Innovative and Local Solutions

In this section, we provide examples of local programs that have evolved to increase the dependability and flexibility of transportation to and from dialysis.^40,41 Ride Connection is a program launched through Portland State University to both study and address transportation issues facing the local dialysis community in Portland, OR.⁴² The program included a 6-month planning phase to identify challenges related to transportation through interviews with patients, caregivers, and health care providers. On the basis of information obtained during the planning phase, Ride Connection implemented centralized scheduling systems, dedicated a dispatcher for coordinating dialysis trips, and partnered with both volunteer drivers and local rideshare companies to provide free rides for patients on dialysis. In follow-up surveys, staff reported that they were spending less time and effort coordinating rides for patients. Patients reported fewer stressful experiences such as being left without a ride at the dialysis center, having to contact more than one transportation provider, and having to spend time thinking about and planning transportation to and from dialysis. During early follow-up after program implementation, a number of patients also reported fewer missed dialysis sessions. In another example, the Center for Urban Transportation Research at the University of South Florida surveyed 40 transportation companies from across the state to identify best practices of transporting patients treated with maintenance dialysis. Best practices identified in this study included designating a point person from the transportation company to communicate with dialysis facility staff, assigning the same driver to the same patient over time to improve service continuity, and identifying opportunities for ride sharing between patients living close to one another.⁴¹

Most recently, broad restrictions on public transit services along with disruptions to care during the coronavirus disease 2019 pandemic led to longer travel and wait times among patients receiving in-center hemodialysis.^43–45 One change that may persist beyond pandemic times is increased partnerships with rideshare and ride-hailing companies for rides to various medical services. To ease the burden of transportation for beneficiaries, Medicaid programs in at least three states also lifted restrictions on partnering with rideshare companies for NEMT during the pandemic.^21,46 Finally, surveys of patient experiences with transportation to and from dialysis during the pandemic may offer fresh insights on how to reduce dissatisfaction with wait times in other context, such as the implementation of apps to track real-time vehicle location.⁴³

Transportation to and from in-center hemodialysis treatments is a critically important service that can have a profound effect on patients' experiences of illness and care that has received relatively little attention in the literature. Because Medicare—the dominant payer for maintenance dialysis in this country—does not cover the costs of NEMT to and from dialysis treatments, this responsibility generally falls either to patients and their family members and friends or to a range of public and private programs and entities not designed, and poorly equipped, to meet the substantial transportation needs of people receiving in-center dialysis. While new approaches to financing dialysis care for Medicare beneficiaries seem to recognize the integral role of transportation most are not designed to meet the extensive transportation needs of patients undergoing in-center dialysis or address disparities in access to and outcomes of dialysis care among minoritized and marginalized segments of the dialysis population. Grassroots efforts in local communities and adaptations during the COVID-19 pandemic suggest there may be untapped opportunities to improve transportation for people receiving in-center hemodialysis.

Disclosures

Y.N. Hall reports advisory or leadership role: Editorial Board, American Journal of Kidney Diseases (unpaid) and other interests or relationships: Northwest Kidney Centers (prior Medical Director). Ms. T. Kranze serves as the Chief Executive Officer of the National Kidney Foundation of Louisiana. T. Kranze reports employer: National Kidney Foundation of Louisiana, Inc. Dr. A.M. O'Hare receives research funding from the National Institute of Diabetes and Digestive and Kidney Diseases and the VA Health Services Research and Development Service. She also reports receiving honoraria and travel support from the University of Colorado and her spouse receives a stipend from the American Board of Internal Medicine for advisory and leadership roles in the organization. Dr. S.G. Watnick serves as the Chief Medical Officer of Northwest Kidney Centers in Seattle, WA. S.G. Watnick reports ownership interest: Interwell—stock options; honoraria: American Society of Nephrology—BRCU, Policy (KCP Co-Chair); advisory or leadership role: CJASN Editorial Board, ASN Quality Committee, ASN Policy, and Advocacy Committee (unpaid); ASN Corepresentative for KCP (paid); and other interests or relationships: CMO of Northwest Kidney Centers, a not-for-profit organization, plan to join Quanta Advisory Board. All remaining authors have nothing to disclose.

Funding

Dr. F.F. Tian received funding from the National Institutes of Health T32 grant (T32 DK007467). Dr. A.M. O'Hare reports receiving grants from the National Institute of Diabetes and Digestive and Kidney Diseases and the VA Health Services Research and Development Service.

Author Contributions

Writing – original draft: Yoshio N. Hall, Frances F. Tian.

Writing – review & editing: Sauntia Griffin, Yoshio N. Hall, Torie Kranze, Debra Marcella, Ann M. O’Hare, Suzanne Watnick.