Primary care interventions to encourage organ donation registration: a systematic review

BACKGROUND: Previous research has proposed that primary care interventions to increase organ donation rates can help address the discrepancy between organ donation rates and the number of patients awaiting transplant. However, no systematic review has been conducted to examine interventions in this setting. OBJECTIVE: To synthesise evidence from previous organ donation interventions conducted in a primary care setting. METHODS: Six databases and grey literature were systematically searched between November 2016 and July 2017. Inclusion criteria included English language, studies published after the year 2000 and unpublished studies. A quality assessment and narrative synthesis was conducted. RESULTS: Ten studies met the inclusion criteria, nine of which examined actual organ donor registration as their primary outcome. Eight interventions increased registration to be an organ donor. Successful interventions utilised active methods of participant engagement that encouraged donation at the point of patient contact. DISCUSSION: Despite the small pool of studies that met the inclusion criteria, the results suggest that primary care interventions could produce promising results for increasing organ donation registration. However, additional higher quality studies are required before firm conclusions can be made. Barriers to implementation were also found and suggest that the feasibility of a primary care environment for organ donation intervention should be investigated

The Impact of Cardiovascular Disease Risk Factors on Late Graft Outcome Disparities in Adult African American Kidney Transplant Recipients

Introduction: Although outcome disparities for non-Hispanic Black (NHB) kidney transplant recipients are well known and documented, there is paucity in the data assessing the impact of cardiovascular disease (CVD) risk factors and risk control on racial disparities in kidney transplantation. Methods: Longitudinal study of a national cohort of veteran kidney recipients transplanted between Jan 2001 and Dec 2007 (follow up through Dec 2010) with the aim of determining the prevalence and impact of CVD risk factor and control, compared between NHB and non-Hispanic White (NHW) recipients, on death-censored graft loss (DCGL), overall graft loss and mortality. Data included comprehensive baseline characteristics acquired through the USRDS with detailed follow up clinical, laboratory and medication regimen information acquired through linkage to the VA electronic health records. Analyses were conducted using sequential multivariable modeling (Cox regression), incorporating blocks of variables into iterative nested models. Results: 3,139 patients with complete data were included (2,095 NHW [66.7%] and 1,044 NHBs [33.3%]). At five years post-transplant, NHBs had a higher prevalence of hypertension (100% vs. 99.2%, p\u3c0.01) and post-transplant diabetes (58.9% vs. 53.3%, p\u3c0.01) with reduced control of hypertension (BP \u3c140/90, 60% vs. 69% p\u3c0.01), diabetes (A1c \u3c7%, 35% vs. 47%, p\u3c0.01) and LDL (\u3c100 mg/dL, 55% vs. 61%, p\u3c0.01), when compared to NHWs. Adherence to several medication classes used to manage CVD risk factors was significantly lower in NHBs, as compared to NHWs. The unadjusted risk of DCGL was two-fold higher in NHBs, when compared to NHWs (HR 2.00, 95% CI 1.61-2.49). After adjustment for recipient sociodemographics, donor criteria, transplant characteristics, CVD risk factors and control and post-transplant events, the adjusted independent risk of DCGL was substantially reduced (HR 1.49, 1.11-1.99). CVD risk factors and risk control reduced the influence of NHB race on DCGL by 8.7-17.5%. Similar trends were noted for the outcomes of overall graft loss and mortality and were consistent in multiple sensitivity analyses. Conclusion: These results demonstrate that NHB kidney transplant recipients have substantially higher rates of CVD risk factors and reduced CVD risk control, as compared to NHWs. These issues may be partly related to medication non-adherence and meaningfully contribute to disparities for graft outcomes within NHBs

Racial Disparities in the Delivery of Health Care

This Article focuses on the role of conscious and unconscious racial bias in the delivery of care; it does not begin to address the larger issue of inadequate access to care at the outset. Improving access to health care for minorities will undoubtedly have a positive effect on these groups\u27 overall health status; however, to the extent that racial bias in the delivery of care exists apart from problems of inadequate access, the disparity in health status between whites and African Americans will no doubt continue. Part II of this Article describes racial disparities in a variety of health care contexts including the utilization of Medicare services, the selection of recipients for cadaveric organ transplantation, access to drug therapy, institutionalization for mental illness, and the representation of racial and ethnic minority groups in clinical research. Part II closes with a discussion of some of the problems inherent in measuring the degree of the disparate care problem and in isolating and evaluating the role that race plays in health care decisionmaking. Part III suggests potential solutions to the problem of disparate medical care for racial minorities, including possible constitutional and statutory remedies for past victims of disparate treatment, avenues for governmental enforcement of policies prohibiting discrimination, and other approaches for avoiding future inequalities in the delivery of medical services. This Article concludes that prospective approaches, such as education and regulatory responses to patterns of disparate care, provide the most promising avenues for addressing this troubling problem

An overview of the research evidence on ethnicity and communication in healthcare

• The aim of the present study was to identify and review the available research evidence on 'ethnicity and communication' in areas relevant to ensuring effective provision of mainstream services (e.g. via interpreter, advocacy and translation services); provision of services targeted on communication (e.g. speech and language therapy, counselling, psychotherapy); consensual/ participatory activities (e.g. consent to interventions), and; procedures for managing and planning for linguistic diversity

A Partnership for Health: Minorities & Biomedical Research

The National Institute of Allergy and Infectious Diseases (NIAID) has long recognized that minority populations bear a disproportionate burden of sickness and disease in the United States. Differences in racial and ethnic backgrounds can affect susceptibility to infectious and immunologic diseases, including acquired immunodeficiency syndrome (AIDS), asthma, sexually transmitted infections, and kidney disease. Moreover, minority populations often do not fully benefit from research advances that have helped improve the health of other Americans. For more than 50 years, NIAID has progressed in understanding, treating, and preventing infectious and immunologic diseases known to occur disparately in minority populations. As outlined in its Strategic Plan for Addressing Health Disparities, NIAID continues to prioritize basic, clinical, and epidemiological research in addressing the health disparities in minority populations. Specifically, NIAID supports efforts to increase the participation of minority scientists in its research, increase the participation of the minority community in clinical research, and design targeted outreach activities for minority communities that communicate research developments and health risk

Registration and Familial Consent for Deceased Organ Donation Among Ethnic Minorities in Ontario, Canada: Opportunities for Improvement

Canadians on the transplant waiting list are dying every day because there are not enough available solid organs for transplantation. An important aspect of addressing this problem is to increase deceased organ donation consent rates. Consent rates are, in part, affected by the number of adults registering their commitment to deceased organ donation in the event of their death through a donor registry. In provinces such as Ontario, approximately 30% of the population is registered for deceased organ donation and approximately 60% of families consent to organ donation. These low figures have been attributed, without evidence, to the relatively high proportion of immigrants or ethnic minorities living in Ontario. This research uses Ontario’s large administrative databases to examine organ and tissue donor registration in the general population and familial consent among those referred for organ and tissue donation. Modified-Poisson regression was used to identify characteristics associated with donor registration and familial consent. The first manuscript examines deceased organ donor registration and familial consent among Chinese, South Asian and the remaining general public. Chinese and South Asian individuals registered and their families consented less for deceased organ donation than the general public. The second manuscript examines deceased organ donor registration among immigrants compared to long-term residents and identifies and quantifies characteristics associated with organ donor registration. Compared to long-term residents, immigrants as a group were much less likely to register for organ and tissue donation. Characteristics among the immigrant population associated with a higher likelihood of registration included economic immigrant status, living in a rural area (population \u3c 10 000), living in an area with a lower ethnic concentration, less material deprivation, a higher education, ability to speak English and French, and more years residing in Canada. The third manuscript examines familial consent among immigrants and identifies and quantifies characteristics associated with familial consent. Compared to long-term residents, families of immigrants as a group were less likely to consent for deceased organ donation. However, there was no statistical difference in consent rates among immigrants and long-term residents who had registered for organ and tissue donation. The information gained from this study will guide organ procurement organization’s strategies and approaches to organ and tissue donation. These results can be used to implement and design donor awareness campaigns targeted at groups with lower donor registration and consent rates that are culturally sensitive and effective

Frailty and Outcomes in Liver Transplantation: A Dissertation

In recent years, the transplant community has explored and adopted tools for quantifying clinical insight into illness severity and frailty. This dissertation work explores the interplay between objective and subjective assessments of physical health status and the implications for liver transplant candidate and recipient outcomes. The first aim characterizes national epidemiologic trends and the impact of Centers for Medicare and Medicaid quality improvement policies on likelihood of waitlist removal based on the patient being too frail to benefit from liver transplant (“too sick to transplant”). This aim includes more than a decade (2002–2012) of comprehensive national transplant waitlist data (Scientific Registry of Transplant Recipients (SRTR)). The second aim will assess and define objective parameters of liver transplant patient frailty by measuring decline in lean core muscle mass (“sarcopenia”) using abdominal CT scans collected retrospectively at a single U.S. transplant center between 2006 and 2015. The relationship between these objective sarcopenia measures and subjective functional status assessed using the Karnofsky Functional Performance (KPS) scale are described and quantified. The third aim quantifies the extent to which poor functional status (KPS) pre-transplant is associated with worse post-transplant survival and includes national data on liver transplantations conducted between 2005 and 2014 (SRTR). The results of this dissertation will help providers in the assessment of frailty and subsequent risk of adverse outcomes and has implications for strategic clinical management in anticipation of surgery. This research will also to serve to inform national policy on the design of transplant center performance measures

Risk Factors for Frequent Readmissions and Barriers to Transplantation in Patients with Cirrhosis

Background: Hospital readmission rate is receiving increasing regulatory scrutiny. Patients with cirrhosis have high hospital readmissions rates but the relationship between frequent readmissions and barriers to transplantation remains unexplored. The goal of this study was to determine risk factors for frequent readmissions among patients with cirrhosis and identify barriers to transplantation in this population. Methods: We retrospectively reviewed medical records of 587 patients with a confirmed diagnosis of cirrhosis admitted to a large tertiary care center between May 1, 2008 and May 1, 2009. Demographics, clinical factors, and outcomes were recorded. Multivariate logistic regression was performed to identify risk factors for high readmission rates. Transplant-related factors were assessed for patients in the high readmission group. Results: The 587 patients included in the study had 1557 admissions during the study period. A subset of 87 (15%) patients with 5 or more admissions accounted for 672 (43%) admissions. The factors associated with frequent admissions were non-white race (OR = 2.45, p = 0.01), diabetes (OR = 2.04, p = 0.01), higher Model for End-Stage Liver Disease (MELD) score (OR = 35.10, p30) and younger age (OR = 0.98, p = 0.02). Among the 87 patients with ≥5 admissions, only 14 (16%) underwent liver transplantation during the study period. Substance abuse, medical co-morbidities, and low (<15) MELD scores were barriers to transplantation in this group. Conclusions: A small group of patients with cirrhosis account for a disproportionately high number of hospital admissions. Interventions targeting this high-risk group may decrease frequent hospital readmissions and increase access to transplantation. © 2013 Ganesh et al

Time to Surgical Referral in Non-Hispanic White and Black Patients with Primary Hyperparathyroidism

Primary hyperparathyroidism is the excessive secretion of parathyroid hormone by one or more parathyroid glands, resulting in hypercalcemia. Primary hyperparathyroidism can be safely cured by parathyroidectomy, but there are well-established racial differences in disease burden at the time of parathyroidectomy with Black patients exhibiting greater serum calcium, parathyroid hormone levels and parathyroid gland size compared to non-Hispanic White patients. However, few studies investigate what factors contribute to these differences. We hypothesize that Black patients experience greater time between presentation with hypercalcemia and surgical referral date than non-Hispanic White patients. To test this hypothesis, we will carry out a retrospective review on all Black and non-Hispanic White patients in the Yale-New Haven Health System with hypercalcemia from January 2014 – December 2015. This study may offer some insight into the racially disparate disease burden in Black patients and may suggest potential interventions to minimize racial disparities in the management of primary hyperparathyroidism