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Race, Ethnicity, and End-of-Life Care in Dialysis Patients in the United States.

ABSTRACT: BACKGROUND:End-of-life care is a prominent consideration in patients on maintenance dialysis, especially when death appears imminent and quality of life is poor. To date, examination of race- and ethnicity-associated disparities in end-of-life care for patients with ESRD has largely been restricted to comparisons of white and black patients. METHODS:We performed a retrospective national study using United States Renal Data System files to determine whether end-of-life care in United States patients on dialysis is subject to racial or ethnic disparity. The primary outcome was a composite of discontinuation of dialysis and death in a nonhospital or hospice setting. RESULTS:Among 1,098,384 patients on dialysis dying between 2000 and 2014, the primary outcome was less likely in patients from any minority group compared with the non-Hispanic white population (10.9% versus 22.6%, P<0.001, respectively). We also observed similar significant disparities between any minority group and non-Hispanic whites for dialysis discontinuation (16.7% versus 31.2%), as well as hospice (10.3% versus 18.1%) and nonhospital death (34.4% versus 46.4%). After extensive covariate adjustment, the primary outcome was less likely in the combined minority group than in the non-Hispanic white population (adjusted odds ratio, 0.55; 95% confidence interval, 0.55 to 0.56; P<0.001). Individual minority groups (non-Hispanic Asian, non-Hispanic black, non-Hispanic Native American, and Hispanic) were significantly less likely than non-Hispanic whites to experience the primary outcome. This disparity was especially pronounced for non-Hispanic Native American and Hispanic subgroups. CONCLUSIONS:There appear to be substantial race- and ethnicity-based disparities in end-of-life care practices for United States patients receiving dialysis.

SUBMITTER: Foley RN

PROVIDER: S-EPMC6115657 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Race, Ethnicity, and End-of-Life Care in Dialysis Patients in the United States.

Foley Robert N RN Sexton Donal J DJ Drawz Paul P Ishani Areef A Reule Scott S

Journal of the American Society of Nephrology : JASN 20180809 9

<h4>Background</h4>End-of-life care is a prominent consideration in patients on maintenance dialysis, especially when death appears imminent and quality of life is poor. To date, examination of race- and ethnicity-associated disparities in end-of-life care for patients with ESRD has largely been restricted to comparisons of white and black patients.<h4>Methods</h4>We performed a retrospective national study using United States Renal Data System files to determine whether end-of-life care in Unit ...[more]

PMID: 30093455

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Project description:BackgroundCulture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care.Methods and findingsIn this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n?=?171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach ??=?0.98); and significantly associated with US birthplace (r?=?0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR?=?1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR?=?0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR?=?1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR?=?2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR?=?1.59, 95% CI:1.20-2.12).ConclusionThe USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).

Project description:Palliative care improves quality-of-life and extends survival, however, is underutilized among gynecological cancer patients in the United States (U.S.). Our objective was to evaluate associations between healthcare access (HCA) measures and palliative care utilization among U.S. gynecological cancer patients overall and by race/ethnicity. We used 2004-2016 data from the U.S. National Cancer Database and included patients with metastatic (stage III-IV at-diagnosis) ovarian, cervical, and uterine cancer (n = 176,899). Palliative care was defined as non-curative treatment and could include surgery, radiation, chemotherapy, and pain management, or any combination. HCA measures included insurance type, area-level socioeconomic measures, distance-to-care, and cancer treatment facility type. We evaluated associations of HCA measures with palliative care use overall and by race/ethnicity using multivariable logistic regression. Our population was mostly non-Hispanic White (72%), had ovarian cancer (72%), and 24% survived <6 months. Five percent of metastatic gynecological cancer patients utilized palliative care. Compared to those with private insurance, uninsured patients with ovarian (aOR: 1.80,95% CI: 1.53-2.12), and cervical (aOR: 1.45,95% CI: 1.26-1.67) cancer were more likely to use palliative care. Patients with ovarian (aOR: 0.58,95% CI: 0.48-0.70) or cervical cancer (aOR: 0.74,95% CI: 0.60-0.88) who reside >45 miles from their provider were less likely to utilize palliative care than those within <2 miles. Ovarian cancer patients treated at academic/research programs were less likely to utilize palliative care compared to those treated at community cancer programs (aOR: 0.70, 95%CI: 0.58-0.84). Associations between HCA measures and palliative care utilization were largely consistent across U.S. racial-ethnic groups. Insurance type, cancer treatment facility type, and distance-to-care may influence palliative care use among metastatic gynecological cancer patients in the U.S.

Project description:The relevance of race and ethnicity to genetics and medicine has long been a matter of debate. An emerging consensus holds that race and ethnicity are social constructs and thus poor proxies for genetic diversity. The goal of this study was to evaluate the relationship between race, ethnicity, and clinically relevant pharmacogenomic variation in cosmopolitan populations. We studied racially and ethnically diverse cohorts of 65,120 participants from the United States All of Us Research Program (All of Us) and 31,396 participants from the United Kingdom Biobank (UKB). Genome-wide patterns of pharmacogenomic variation-6311 drug response-associated variants for All of Us and 5966 variants for UKB-were analyzed with machine learning classifiers to predict participants' self-identified race and ethnicity. Pharmacogenomic variation predicts race/ethnicity with averages of 92.1% accuracy for All of Us and 94.3% accuracy for UKB. Group-specific prediction accuracies range from 99.0% for the White group in UKB to 92.9% for the Hispanic group in All of Us. Prediction accuracies are substantially lower for individuals who identified with more than one group in All of Us (16.7%) or as Mixed in UKB (70.7%). There are numerous individual pharmacogenomic variants with large allele frequency differences between race/ethnicity groups in both cohorts. Frequency differences for toxicity-associated variants predict hundreds of adverse drug reactions per 1000 treated participants for minority groups in All of Us. Our results indicate that race and ethnicity can be used to stratify pharmacogenomic risk in the US and UK populations and should not be discounted when making treatment decisions. We resolve the contradiction between the results reported here and the orthodoxy of race and ethnicity as non-genetic, social constructs by emphasizing the distinction between global and local patterns of human genetic diversity, and we stress the current and future limitations of race and ethnicity as proxies for pharmacogenomic variation.

Project description:Background and objectivesWe investigated whether the recent growth in home dialysis use was proportional among all racial/ethnic groups and also whether there were changes in racial/ethnic differences in home dialysis outcomes.Design, setting, participants, & measurementsThis observational cohort study of US Renal Data System patients initiating dialysis from 2005 to 2013 used logistic regression to estimate racial/ethnic differences in home dialysis initiation over time, and used competing risk models to assess temporal changes in racial/ethnic differences in home dialysis outcomes, specifically: (1) transfer to in-center hemodialysis (HD), (2) mortality, and (3) transplantation.ResultsOf the 523,526 patients initiating dialysis from 2005 to 2013, 55% were white, 28% black, 13% Hispanic, and 4% Asian. In the earliest era (2005-2007), 8.0% of white patients initiated dialysis with home modalities, as did a similar proportion of Asians (9.2%; adjusted odds ratio [aOR], 0.95; 95% confidence interval [95% CI], 0.86 to 1.05), whereas lower proportions of black [5.2%; aOR, 0.71; 95% CI, 0.66 to 0.76] and Hispanic (5.7%; aOR, 0.83; 95% CI, 0.86 to 0.93) patients did so. Over time, home dialysis use increased in all groups and racial/ethnic differences decreased (2011-2013: 10.6% of whites, 8.3% of blacks [aOR, 0.81; 95% CI, 0.77 to 0.85], 9.6% of Hispanics [aOR, 0.94; 95% CI, 0.86 to 1.00], 14.2% of Asians [aOR, 1.04; 95% CI, 0.86 to 1.12]). Compared with white patients, the risk of transferring to in-center HD was higher in blacks, similar in Hispanics, and lower in Asians; these differences remained stable over time. The mortality rate was lower for minority patients than for white patients; this difference increased over time. Transplantation rates were lower for blacks and similar for Hispanics and Asians; over time, the difference in transplantation rates between blacks and Hispanics versus whites increased.ConclusionsFrom 2005 to 2013, as home dialysis use increased, racial/ethnic differences in initiating home dialysis narrowed, without worsening rates of death or transfer to in-center HD in minority patients, as compared with white patients.

Dataset Information

Race, Ethnicity, and End-of-Life Care in Dialysis Patients in the United States.

Publications

Race, Ethnicity, and End-of-Life Care in Dialysis Patients in the United States.

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