The Complex Patchwork of Transportation for In-Center Hemodialysis.

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.

Value Placed on Comfort vs Life Prolongation Among Patients Treated With Maintenance Dialysis.

Importance: Patients receiving maintenance dialysis experience intensive patterns of end-of-life care that might not be consistent with their values. Objective: To evaluate the association of patients' health care values with engagement in advance care planning and end-of-life care. Design, Setting, and Participants: Survey study of patients who received maintenance dialysis between 2015 and 2018 at dialysis centers in the greater metropolitan areas of Seattle, Washington, and Nashville, Tennessee, with longitudinal follow-up of decedents. Logistic regression models were used to estimate probabilities. Data analysis was conducted between May and October 2022. Exposures: A survey question about the value that the participant would place on longevity-focused vs comfort-focused care if they were to become seriously ill. Main Outcomes and Measures: Self-reported engagement in advance care planning and care received near the end of life through 2020 using linked kidney registry data and Medicare claims. Results: Of 933 patients (mean [SD] age, 62.6 [14.0] years; 525 male patients [56.3%]; 254 [27.2%] identified as Black) who responded to the question about values and could be linked to registry data (65.2% response rate [933 of 1431 eligible patients]), 452 (48.4%) indicated that they would value comfort-focused care, 179 (19.2%) that they would value longevity-focused care, and 302 (32.4%) that they were unsure about the intensity of care they would value. Many had not completed an advance directive (estimated probability, 47.5% [95% CI, 42.9%-52.1%] of those who would value comfort-focused care vs 28.1% [95% CI, 24.0%-32.3%] of those who would value longevity-focused care or were unsure; P < .001), had not discussed hospice (estimated probability, 28.6% [95% CI, 24.6%-32.9%] comfort focused vs 18.2% [95% CI, 14.7%-21.7%] longevity focused or unsure; P < .001), or had not discussed stopping dialysis (estimated probability, 33.3% [95% CI, 29.0%-37.7%] comfort focused vs 21.9% [95% CI, 18.2%-25.8%] longevity focused or unsure; P < .001). Most respondents wanted to receive cardiopulmonary resuscitation (estimated probability, 78.0% [95% CI, 74.2%-81.7%] comfort focused vs 93.9% [95% CI, 91.4%-96.1%] longevity focused or unsure; P < .001) and mechanical ventilation (estimated probability, 52.0% [95% CI, 47.4%-56.6%] comfort focused vs 77.9% [95% CI, 74.0%-81.7%] longevity focused or unsure; P < .001). Among decedents, the percentages of participants who received an intensive procedure during the final month of life (estimated probability, 23.5% [95% CI, 16.5%-31.0%] comfort focused vs 26.1% [95% CI, 18.0%-34.5%] longevity focused or unsure; P = .64), discontinued dialysis (estimated probability, 38.3% [95% CI, 32.0%-44.8%] comfort focused vs 30.2% [95% CI, 23.0%-37.8%] longevity focused or unsure; P = .09), and enrolled in hospice (estimated probability, 32.2% [95% CI, 25.7%-38.7%] comfort focused vs 23.3% [95% CI, 16.4%-30.5%] longevity focused or unsure; P = .07) were not statistically different. Conclusions and Relevance: This survey study found that there appeared to be a disconnect between patients' expressed values, which were largely comfort focused, and their engagement in advance care planning and end-of-life care, which reflected a focus on longevity. These findings suggest important opportunities to improve the quality of care for patients receiving dialysis.

Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis: United States Renal Data System Study of Treatment Preferences (USTATE).

Importance: Prognostic understanding can shape patients' treatment goals and preferences. Patients undergoing dialysis in the United States have limited life expectancy and may receive end-of-life care directed at life extension. Little is known about their prognostic expectations. Objective: To understand the prognostic expectations of patients undergoing dialysis and how these relate to care planning, goals, and preferences. Design, Setting, and Participants: Cross-sectional survey study of 996 eligible patients treated with regular dialysis at 31 nonprofit dialysis facilities in 2 metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 2015 and October 2018. After a pilot phase, 1434 eligible patients were invited to participate (response rate, 69.5%). To provide a context for interpreting survey participants' prognostic estimates, United States Renal Data System standard analysis files were used to construct a comparison cohort of 307 602 patients undergoing in-center hemodialysis on January 1, 2006, and followed for death through July 31, 2017. Final analyses for this study were conducted between November 2018 and March 2019. Exposures: Responses to the question "How long would you guess people your age with similar health conditions usually live?" (<5 years, 5-10 years, >10 years, or not sure). Main Outcomes and Measures: Self-reported (1) documentation of a surrogate decision-maker, (2) documentation of treatment preferences, (3) values around life prolongation, (4) preferences for receipt of cardiopulmonary resuscitation and mechanical ventilation, and (5) desired place of death. Results: Of the 996 survey respondents, the mean (SD) age was 62.7 (13.9) years, and 438 (44.0%) were women. Overall, 112 (11.2%) survey respondents selected a prognosis of fewer than 5 years, 150 (15.1%) respondents selected 5 to 10 years, 330 (33.1%) respondents selected more than 10 years, and 404 (40.6%) were not sure. By comparison, 185 427 (60.3%) prevalent US in-center patients undergoing hemodialysis died within 5 years, 58 437 (19.0%) died within 5 to 10 years, and 63 738 (20.7%) lived more than 10 years. In analyses adjusted for participant characteristics, survey respondents with a prognostic expectation of more than 10 years (vs <5 years) were less likely to report documentation of a surrogate decision-maker (adjusted odds ratio [aOR], 0.6; 95% CI, 0.4-0.9) and treatment preferences (aOR, 0.4; 95% CI, 0.2-0.6) and to value comfort over life extension (aOR, 0.1; 95% CI, 0.04-0.3), and were more likely to want cardiopulmonary resuscitation (aOR, 5.3; 95% CI, 3.2-8.7) and mechanical ventilation (aOR, 2.2; 95% CI, 1.2-3.7). The respondents who reported that they were not sure about prognosis had similar associations. Conclusions and Relevance: Uncertain and overly optimistic prognostic expectations may limit the benefit of advance care planning and contribute to high-intensity end-of-life care in patients undergoing dialysis.

Association of Inpatient Palliative Care with Health Care Utilization and Postdischarge Outcomes among Medicare Beneficiaries with End Stage Kidney Disease.

BACKGROUND AND OBJECTIVES: Palliative care may improve quality of life and reduce the cost of care for patients with chronic illness, but utilization and cost implications of palliative care in ESKD have not been evaluated. We sought to determine the association of inpatient palliative care with health care utilization and postdischarge outcomes in ESKD. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In analyses stratified by whether patients died during the index hospitalization, we identified Medicare beneficiaries with ESKD who received inpatient palliative care, ascertained by provider specialty codes, between 2012 and 2013. These patients were matched to hospitalized patients who received usual care using propensity scores. Primary outcomes were length of stay and hospitalization costs. Secondary outcomes were 30-day readmission and hospice enrollment. RESULTS: Inpatient palliative care occurred in <1% of hospitalizations lasting >2 days. Among the decedent cohort (n=1308), inpatient palliative care was associated with a 21% shorter length of stay (-4.2 days; 95% confidence interval, -5.6 to -2.9 days) and 14% lower hospitalization costs (-$10,698; 95% confidence interval, -$17,553 to -$3843) compared with usual care. Among the nondecedent cohort (n=5024), inpatient palliative care was associated with no difference in length of stay (0.4 days; 95% confidence interval, -0.3 to 1.0 days) and 11% higher hospitalization costs ($4275; 95% confidence interval, $1984 to $6567) compared with usual care. In the 30-day postdischarge period, patients who received inpatient palliative care had higher likelihood of hospice enrollment (hazard ratio, 8.3; 95% confidence interval, 6.6 to 10.5) and lower likelihood of rehospitalization (hazard ratio, 0.8; 95% confidence interval, 0.7 to 0.9). CONCLUSIONS: Among patients with ESKD who died in the hospital, inpatient palliative care was associated with shorter hospitalizations and lower costs. Among those who survived to discharge, inpatient palliative care was associated with no difference in length of stay and higher hospitalization costs but markedly higher hospice use and fewer readmissions after discharge.

Hospice Use And End-Of-Life Spending Trajectories In Medicare Beneficiaries On Hemodialysis.

Infrequent and late referral to hospice among patients on dialysis likely reflects the impact of a Medicare payment policy that discourages the concurrent receipt of these services, but it may also reflect these patients' less predictable illness trajectories. Among a national cohort of patients on hemodialysis, we identified four distinct spending trajectories during the last year of life that represented markedly different intensities of care. Within the cohort, 9 percent had escalating spending and 13 percent had persistently high spending throughout the last year of life, while 41 percent had relatively low spending with late escalation, and 37 percent had moderate spending with late escalation. Across the four groups, the percentages of patients enrolled in hospice at the time of death were uniformly low ranging from only 19 percent of those with persistently high costs to 21 percent of those with moderate costs and the median number of days spent in hospice during the last year of life was virtually the same (either five or six days). These findings signal the need for greater flexibility in the provision of end-of-life care in this population.

Social Determinants of Health: Addressing Unmet Needs in Nephrology.

There is ongoing recognition that a wide array of social, economic, and environmental factors influence individuals' opportunities to engage in health care and healthy behaviors. Despite spending $34 billion annually on the care of patients with end-stage renal disease, the American public and nephrology community remain remarkably complacent about addressing "upstream" factors that influence the prevention, progression, and treatment of chronic kidney diseases. Recently, a growing number of health plans and dialysis providers have begun to embrace population health management; accept greater accountability for health, health care, and health costs; and envision kidney health beyond their traditional roles in care delivery. This narrative offers a framework to evaluate social determinants of health and understand their link to chronic kidney diseases and provides recommendations for integrating social determinants into clinical care and delivery settings to assist vulnerable patients with broad social needs. Addressing unmet social needs with the same intention as treating hypertension, proteinuria, or anemia represents an important step toward making optimal health a palpable reality for all people who are at risk for or affected by chronic kidney diseases.

Risk prediction to inform surveillance of chronic kidney disease in the US Healthcare Safety Net: a cohort study.

BACKGROUND: The capacity of electronic health record (EHR) data to guide targeted surveillance in chronic kidney disease (CKD) is unclear. We sought to leverage EHR data for predicting risk of progressing from CKD to end-stage renal disease (ESRD) to help inform surveillance of CKD among vulnerable patients from the healthcare safety-net. METHODS: We conducted a retrospective cohort study of adults (n = 28,779) with CKD who received care within 2 regional safety-net health systems during 1996-2009 in the Western United States. The primary outcomes were progression to ESRD and death as ascertained by linkage with United States Renal Data System and Social Security Administration Death Master files, respectively, through September 29, 2011. We evaluated the performance of 3 models which included demographic, comorbidity and laboratory data to predict progression of CKD to ESRD in conditions commonly targeted for disease management (hypertension, diabetes, chronic viral diseases and severe CKD) using traditional discriminatory criteria (AUC) and recent criteria intended to guide population health management strategies. RESULTS: Overall, 1730 persons progressed to end-stage renal disease and 7628 died during median follow-up of 6.6 years. Performance of risk models incorporating common EHR variables was highest in hypertension, intermediate in diabetes and chronic viral diseases, and lowest in severe CKD. Surveillance of persons who were in the highest quintile of ESRD risk yielded 83-94 %, 74-95 %, and 75-82 % of cases who progressed to ESRD among patients with hypertension, diabetes and chronic viral diseases, respectively. Similar surveillance yielded 42-71 % of ESRD cases among those with severe CKD. Discrimination in all conditions was universally high (AUC ≥0.80) when evaluated using traditional criteria. CONCLUSIONS: Recently proposed discriminatory criteria account for varying risk distribution and when applied to common clinical conditions may help to inform surveillance of CKD in diverse populations.

State medicaid coverage, ESRD incidence, and access to care.

The proportion of low-income nonelderly adults covered by Medicaid varies widely by state. We sought to determine whether broader state Medicaid coverage, defined as the proportion of each state's low-income nonelderly adult population covered by Medicaid, associates with lower state-level incidence of ESRD and greater access to care. The main outcomes were incidence of ESRD and five indicators of access to care. We identified 408,535 adults aged 20-64 years, who developed ESRD between January 1, 2001, and December 31, 2008. Medicaid coverage among low-income nonelderly adults ranged from 12.2% to 66.0% (median 32.5%). For each additional 10% of the low-income nonelderly population covered by Medicaid, there was a 1.8% (95% confidence interval, 1.0% to 2.6%) decrease in ESRD incidence. Among nonelderly adults with ESRD, gaps in access to care between those with private insurance and those with Medicaid were narrower in states with broader coverage. For a 50-year-old white woman, the access gap to the kidney transplant waiting list between Medicaid and private insurance decreased by 7.7 percentage points in high (>45%) versus low (<25%) Medicaid coverage states. Similarly, the access gap to transplantation decreased by 4.0 percentage points and the access gap to peritoneal dialysis decreased by 3.8 percentage points in high Medicaid coverage states. In conclusion, states with broader Medicaid coverage had a lower incidence of ESRD and smaller insurance-related access gaps.

Understanding and overcoming barriers to living kidney donation among racial and ethnic minorities in the United States.

In the United States, racial-ethnic minorities experience disproportionately high rates of ESRD, but they are substantially less likely to receive living donor kidney transplants (LDKT) compared with their majority counterparts. Minorities may encounter barriers to LDKT at several steps along the path to receiving it, including consideration, pursuit, completion of LDKT, and the post-LDKT experience. These barriers operate at different levels related to potential recipients and donors, health care providers, health system structures, and communities. In this review, we present a conceptual framework describing various barriers that minorities face along the path to receiving LDKT. We also highlight promising recent and current initiatives to address these barriers, as well as gaps in initiatives, which may guide future interventions to reduce racial-ethnic disparities in LDKT.

Regional differences in dialysis care and mortality among American Indians and Alaska Natives.

American Indians/Alaska Natives (AIANs) compose a heterogeneous population that includes geographically distinct tribal communities, many with high rates of ESRD. Regional features of dialysis care and mortality are unknown in this population. Here, we describe the structure of dialysis care and mortality of adult AIANs who initiated maintenance dialysis during 1995-2008 in different regions of the US. Overall, 13,716 AIANs received dialysis at 2054 facilities. Approximately 10% (n = 197) of these facilities provided care to two-thirds (n = 9011) of AIANs. AIANs from the Southwest and Alaska were concentrated in relatively few dialysis facilities whereas those in the Eastern US and Pacific Coast were distributed more diffusely. Despite comparably high rates of poverty, diabetes, and cardiovascular disease, annual mortality rates were lower in the Southwest (13.9%) compared with the Southern Plains (23.2%), Alaska (21.2%), Eastern US (20.0%), Northern Plains (20.8%), and Pacific Coast (22.0%). These regional differences were consistent over time and persisted after adjusting for sociodemographic and clinical variables and area-based poverty. In conclusion, regional differences in the structure of dialysis care and patient mortality exist among AIANs. Southwestern AIANs experience the highest concentration of dialysis care and the lowest mortality. Our findings suggest that an area-based approach examining the care structure of relatively few dialysis facilities may delineate determinants of these differences and improve the quality of care to many AIAN communities.

Racial ethnic differences in rates and determinants of deceased donor kidney transplantation.

Contemporary studies have not comprehensively compared waiting times and determinants of deceased donor kidney transplantation across all major racial ethnic groups in the Unites States. Here, we compared relative rates and determinants of waitlisting and deceased donor kidney transplantation among 503,090 nonelderly adults of different racial ethnic groups who initiated hemodialysis between1995 and 2006 with follow-up through 2008. Annual rates of deceased donor transplantation from the time of dialysis initiation were lowest in American Indians/Alaska Natives (2.4%) and blacks (2.8%), intermediate in Pacific Islanders (3.1%) and Hispanics (3.2%), and highest in whites (5.9%) and Asians (6.4%). Lower rates of deceased donor transplantation among most racial ethnic minority groups appeared primarily to reflect differences in time from waitlisting to transplantation, but this was not the result of higher rates of waitlist inactivity or removal from the waitlist. The fraction of the reduced transplant rates attributable to measured factors (e.g., demographic, clinical, socioeconomic, linguistic, and geographic factors) varied from 14% in blacks to 43% in American Indians/Alaska Natives compared with whites. In conclusion, adjusted rates of deceased donor kidney transplantation remain significantly lower among racial ethnic minorities compared with whites; generally, differences in time to waitlisting were not as pronounced as differences in time between waitlisting and transplantation. Determinants of delays in time to transplantation differed substantially by racial ethnic group. Area-based efforts targeted to address racial- and ethnic-specific delays in transplantation may help to reduce overall disparities in deceased donor kidney transplantation in the United States.

Understanding Racial Differences in Deceased-Donor Kidney Transplantation: Geography, Poverty, Language, and Health Insurance Coverage.

Despite the continued growth of diverse populations on dialysis, no prior studies have comprehensively compared the barriers to kidney transplantation among different racial and ethnic groups. This brief review summarizes key findings from a recent study that examined specific determinants of diminished access to, or delayed completion of, deceased-donor kidney transplantation among major racial-ethnic groups in the United States. In particular, we focus on the relative influence on transplantation rates of clinical factors, such as histocompatibility, residential geography, health insurance coverage, poverty, and other socioeconomic factors according to patient race or ethnicity.

Chronic kidney disease in the urban poor.

BACKGROUND AND OBJECTIVES: In the United States, relatively little is known about clinical outcomes of chronic kidney disease (CKD) in vulnerable populations utilizing public health systems. The primary study objectives were to describe patient characteristics, incident ESRD, and mortality in adults with nondialysis-dependent CKD receiving care in the health care safety net. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Time to ESRD and time to death were examined among a cohort of 15,353 ambulatory adults with nondialysis-dependent CKD from the Community Health Network of San Francisco. RESULTS: The mean age of the CKD cohort was 59.0 +/- 13.8 years; 50% of the cohort was younger than 60 years and 26% was younger than 50 years. Most (72%) were members of nonwhite racial-ethnic groups, 73% were indigent (annual income <$15,000) and 18% were uninsured. In adjusted analyses, blacks [hazard ratio (95% confidence interval), 4.00 (2.99 to 5.35)], Hispanics [2.20 (1.46 to 3.30)], and Asians/Pacific Islanders [3.84 (2.73 to 5.40)] had higher risks of progression to ESRD than non-Hispanic whites. The higher risk of progression to ESRD among nonwhite compared with white persons with CKD was not explained by lower relative mortality. CONCLUSIONS: Adults with CKD stages 3 to 5 cared for within an urban public health system were relatively young and predominantly nonwhite-both factors associated with a higher risk of progression to ESRD. These findings call for targeted efforts to assess the burden and progression of CKD within other public and safety-net health systems in this country.

Characteristics of uninsured Americans with chronic kidney disease.

BACKGROUND: In the United States, public health insurance is available for nearly all persons with end-stage renal disease (ESRD). Little is known about the extent of health insurance coverage for persons with non-dialysis dependent chronic kidney disease (CKD). OBJECTIVE: To describe patterns of health insurance coverage for adults with non-dialysis dependent CKD and to examine risk factors for progression of CKD to ESRD and management of hypertension among those lacking insurance. DESIGN AND PARTICIPANTS: Cross-sectional analysis of data from a nationally representative sample of 16,148 US adults aged 20 years or older who participated in the National Health and Nutrition Examination Survey 1999-2006. MEASUREMENTS: National prevalence estimates of health insurance coverage, ESRD risk factors, and treatment of hypertension. MAIN RESULTS: An estimated 10.0% (95% CI, 8.3%-12.0%) of US adults with non-dialysis dependent CKD were uninsured, 60.9% (95% CI, 58.2%-63.7%) had private insurance and 28.7% (95% CI, 26.4%-31.1%) had public insurance alone. Uninsured persons with non-dialysis dependent CKD were more likely to be under the age of 50 (62.8% vs. 23.0%, P < 0.001) and nonwhite (58.7%, vs. 21.8%, P < 0.001) compared with their insured counterparts. Approximately two-thirds of uninsured adults with non-dialysis dependent CKD had at least one modifiable risk factor for CKD progression, including 57% with hypertension, 40% who were obese, 22% with diabetes, and 13% with overt albuminuria. In adjusted analyses, uninsured persons with non-dialysis dependent CKD were less likely to be treated for their hypertension (OR, 0.59; 95% CI, 0.40-0.85) and less likely to be receiving recommended therapy with angiotensin inhibitors (OR, 0.45; 95% CI, 0.26-0.77) compared with those with insurance coverage. CONCLUSIONS: Uninsured persons with non-dialysis dependent CKD are at higher risk for progression to ESRD than their insured counterparts but are less likely to receive recommended interventions to slow disease progression. Lack of public health insurance for patients with non-dialysis dependent CKD may result in missed opportunities to slow disease progression and thereby reduce the public burden of ESRD.