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1.  Understanding and Overcoming Barriers to Living Kidney Donation among United States Racial and Ethnic Minorities 
In the United States, racial-ethnic minorities experience disproportionately high rates of end stage renal disease, 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 LDKT 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 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.
PMCID: PMC3385991  PMID: 22732044
race; ethnicity; disparities; minority; organ donation; barriers to living kidney donation; living donor kidney transplantation
2.  The providing resources to enhance African American patients’ readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial 
BMC Nephrology  2012;13:135.
Living related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown.
We report the protocol of the Providing Resources to Enhance African American Patients’ Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients’ and families’ proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients’ self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor).
Results from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.
Trial registration NCT01439516
PMCID: PMC3489555  PMID: 23057616
Shared decision-making; Live kidney transplantation; Live kidney donation; Chronic kidney disease; End stage renal disease
3.  Donor Designation: Racial and Ethnic Differences in United States Non-Designators’ Preferred Methods for Disclosing Intent to Donate Organs 
Main Problem
Little is known about racial/ethnic differences in preferred methods of disclosing deceased organ donation intentions among persons not previously designating their organ donation preferences publicly or the association of medical mistrust with preferences.
We surveyed 307 United States (US) adults who had not yet designated their donation intentions via drivers’ licenses or organ donor cards (non-designators) to identify their preferred disclosure methods (personal discussions with family, physicians, or religious representatives or public registration via mail/telephone/computer, workplace, place of religious worship, or grocery store/bank/post office) and to assess the association of mistrust with preferences. In multivariable models, we assessed racial/ethnic differences in preferences and the influence of medical mistrust on preferences.
Non-designators most preferred discussions with physicians (65%) or family members (63%). After adjustment, African Americans (AAs) were more likely than Whites to prefer discussion with religious representatives. In contrast, AAs and Hispanics were less likely than Whites to prefer registration at a workplace or through mail/telephone/computer. Medical mistrust was common and associated with less willingness to disclose via several methods.
Encouraging donation intention disclosure via discussions with physicians, family, and religious representatives and addressing medical mistrust could enhance strategies to improve non-designators’ donation rates.
PMCID: PMC3168712  PMID: 21777299
deceased organ donation; donor designation; minority donation; organ transplantation; public attitudes; racial disparities
5.  Addressing Racial/Ethnic Disparities in Live Donor Kidney Transplantation: Priorities for Research and Intervention 
Seminars in nephrology  2010;30(1):90.
One potential mechanism for reducing racial/ethnic disparities in the receipt of kidney transplants is to enhance minorities’ pursuit of living donor kidney transplantation (LDKT). Pursuit of LDKT is influenced by patients’ personal values, their extended social networks, the healthcare system, and the community at large. This review discusses research and interventions promoting LDKT, especially for minorities, including improving education for patients, donors, and providers, utilizing LDKT kidneys more efficiently, and reducing surgical and financial barriers to transplant. Future directions to increase awareness of LDKT for more racial/ethnic minorities are also discussed including developing culturally tailored transplant education, clarifying transplant-eligibility practice guidelines, strengthening partnerships between community kidney providers and transplant centers, and conducting general media campaigns and community outreach.
PMCID: PMC2818251  PMID: 20116653
Live Donor Kidney Transplantation; LDKT; disparities in kidney transplantation; kidney transplant barriers
6.  Development of a Computerized Medical History Profile for Children in Out-of-Home Placement Using Medicaid Data 
Children in out-of-home placements (foster children) often undergo multiple placement changes while under the care of child protective services. This instability can result in lack of health care continuity and poor health outcomes. This brief describes the development of a medical history profile, or passport, developed from Medicaid administrative data. A purposive sample of 25 youths was provided from a county child protective services agency. The patients were systematically matched with data from the state Medicaid agency. Using Medicaid claims/encounter data we generated health care profiles that provided information on historical use of ambulatory care, diagnoses, providers seen, medications used, and inpatient admissions. Profiles were however limited by missing provider information and non-specific diagnostic coding. Despite these limitations, Medicaid data-based profiles show the potential to be a cost efficient method for improving continuity of care for children in out-of-home placement.
PMCID: PMC2938782  PMID: 19648702
Medicaid; foster care; pediatrics; informatics; continuity of care

Results 1-6 (6)