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1.  A Community-Engaged Cardiovascular Health Disparities Research Training Curriculum: Implementation and Preliminary Outcomes 
To overcome cardiovascular disease (CVD) disparities impacting high-risk populations, it is critical to train researchers and leaders in conducting community-engaged CVD disparities research. The authors summarize the key elements, implementation, and preliminary outcomes of the CVD Disparities Fellowship and Summer Internship Programs at the Johns Hopkins University Schools of Medicine, Nursing, and Bloomberg School of Public Health.
In 2010, program faculty and coordinators established a trans-disciplinary CVD disparities training and career development fellowship program for scientific investigators who desire to conduct community-engaged clinical and translational disparities research. The program was developed to enhance mentorship support and research training for faculty, post-doctoral fellows, and pre-doctoral students interested in conducting CVD disparities research. A CVD Disparities Summer Internship Program for undergraduate and pre-professional students was also created to provide a broad experience in public health and health disparities in Baltimore, Maryland, with a focus on CVD. Since 2010, 39 pre-doctoral, post-doctoral, and faculty fellows have completed the program. Participating fellows have published disparities-related research and given presentations both nationally and internationally. Five research grant awards have been received by faculty fellows. Eight undergraduates, 1 post-baccalaureate, and 2 medical professional students representing seven universities have participated in the summer undergraduate internship. Over half of the undergraduate students are applying to or have been accepted into medical or graduate school. The tailored CVD health disparities training curriculum has been successful at equipping varying levels of trainees (from undergraduate students to faculty) with clinical research and public health expertise to conducting community-engaged CVD disparities research.
PMCID: PMC4175191  PMID: 25054421
2.  Patient Preferences for Noninsulin Diabetes Medications: A Systematic Review 
Diabetes Care  2014;37(7):2055-2062.
An evidence-based synthesis of patient preferences for management of hyperglycemia is needed. Our objective was to systematically review patient preferences for noninsulin diabetes medications in adults with type 2 diabetes.
We searched the PubMed, Embase, CINAHL, and EconLit databases for articles published on or before 23 January 2013. We included English-language studies of adult patients with type 2 diabetes that assessed patient preferences for diabetes medication treatment. Titles, abstracts, and articles were reviewed by at least two independent reviewers. Study data and quality were abstracted with standard protocols.
Of 2,811 titles identified in our original search, 10 articles met inclusion criteria for the systematic review. Studies were conducted from 2007 to 2012 among diverse patient populations in the U.S., Sweden, Denmark, and the U.K. Methods used to assess patient preferences included discrete choice experiments (e.g., conjoint analysis), time tradeoff exercises, standard gamble, and patient surveys. Key attributes of diabetes medication associated with patient preferences included treatment benefits (e.g., glycemic control and weight loss/control), treatment burden (e.g., administration, frequency, and cost), and side effects (e.g., weight gain, gastrointestinal effects, and hypoglycemia).
Various clinical and quality of life–related factors influence patient preferences for noninsulin diabetes medications. Treatment efficacy with regard to glycemic control and weight loss/control and the risk of treatment-related hypoglycemia and gastrointestinal effects are reported to be important drivers of patient treatment selections. Future work is needed to identify practical methods for incorporating patient preferences into treatment decision making and patient-centered care.
PMCID: PMC4067391  PMID: 24963113
3.  Concerns regarding the financial aspects of kidney transplantation: perspectives of pre-transplant patients and their family members 
Clinical transplantation  2014;28(10):1121-1130.
African American and non-African American pre-transplant patients’ and their families’ concerns about the financial costs of kidney transplantation have not been well studied.
We conducted structured group interviews among pre-transplant patients (seven African American, five non-African American) and their family members (six African American, five non-African American) to identify their concerns about transplant health insurance coverage, out-of-pocket expenses, and living donor expenses. We reviewed transcribed group audio recordings and identified common discussion themes.
African American and non-African American patients and family members expressed uncertainty about which transplant-related costs were covered by health insurance and wanted information about how to choose insurance policies accordingly. Patients were particularly concerned about the impact of pre-existing illness on securing optimal health insurance, while family members wanted information about non-insurance-based financial resources. Both patients and family members expressed concern about paying for immunosuppressant medications and about gradual loss of insurance benefits after transplantation. Both patients and family members also expressed concern about potential financial hardships for living donors.
African American and non-African American pre-transplant patients and families expressed a broad range of concerns about transplant health insurance policies, out-of-pocket expenses, non-insurance-based financial resources, and resources to address donors’ financial burden. Efforts to improve education and develop more comprehensive transplant insurance policies are needed to facilitate informed decision-making for potential transplant recipients and donors.
PMCID: PMC4353582  PMID: 25066730
end-stage renal disease; kidney transplantation; patient perspective; qualitative research; shared decision-making
4.  The Contribution of Age and Weight to Blood Pressure Levels Among Blacks and Whites Receiving Care in Community-Based Primary Care Practices 
We examined whether race and age, risk factors for obesity and hypertension, affect the association of obesity with elevated blood pressure (BP). Using electronic medical record data, we conducted a cross-sectional study of adult patients seen at 6 Maryland primary care clinics from September 2011 through June 2012. The risk for higher BP among patients younger than 65 years and in an elevated weight category was greater for both races but was higher for whites than blacks. For patients aged 65 years or older, weight had little impact on systolic BP, suggesting that approaches involving weight loss to address elevated BP should focus on populations younger than 65.
PMCID: PMC4584478  PMID: 26402051
5.  Comparison of Life Participation Activities Among Adults Treated by Hemodialysis, Peritoneal Dialysis, and Kidney Transplantation: A Systematic Review 
A comprehensive assessment of the association of patients’ renal replacement therapy (RRT) modality on their participation in life activities (physical function, travel, recreation, freedom, work) is needed.
Study Design
Systematic review of peer-reviewed published studies.
Setting & Population
Adults undergoing RRT (hemodialysis, peritoneal dialysis, or transplantation).
Selection Criteria for Studies
We searched PubMed, Cochrane Library, and EMBASE from January 1980 through April 2012 for English-language articles that compared participation in life activities among patients receiving 1) hemodialysis compared with peritoneal dialysis, 2) hemodialysis compared with kidney transplantation, or 3) peritoneal dialysis compared with kidney transplantation.
RRT modality.
Reported rates of physical function, travel, recreation, freedom, and work-related activities by RRT modality.
A total of 46 studies (6 prospective cohort, 38 cross-sectional, and 2 pre-post transplantation) provided relevant comparisons of life participation activities among patients treated with hemodialysis, peritoneal dialysis, and kidney transplantation. Studies were conducted from 1985 to 2011 among diverse patient populations in 16 distinct locations. A majority of studies reported greater life participation rates among patients with kidney transplants compared to patients receiving either hemodialysis or peritoneal dialysis. In contrast, a majority of studies reported no differences in outcomes between patients receiving hemodialysis and patients receiving peritoneal dialysis. These results were consistent throughout the study period, across diverse populations, and among the subset of studies that performed appropriate adjustments for potential confounding factors.
Many studies included in the review had significant design weaknesses.
Evidence suggests patients with kidney transplants may experience better rates of life participation compared to patients receiving dialysis, while patients receiving hemodialysis and patients receiving peritoneal dialysis may experience similar rates of life participation. Rigorously performed studies are needed to better inform patients about the association of RRT on these important patient reported outcomes.
PMCID: PMC3809150  PMID: 23725972
dialysis; ESRD treatment; kidney transplantation; physical functioning; quality of life; social participation
6.  Measuring and Explaining Racial and Ethnic Differences in Willingness to Donate Live Kidneys in the United States 
Clinical transplantation  2013;27(5):673-683.
Reasons for US racial-ethnic minority ESRD patients' reported difficulties identifying live kidney donors are poorly understood.
We conducted a national study to develop scales measuring willingness to donate live kidneys among US adults (scores ranged from 0 (not willing) to 10 (extremely willing)), and we tested whether racial-ethnic differences exist in willingness to donate. We also examined whether clinical, sociodemographic, and attitudinal factors mediated potential racial-ethnic differences in willingness.
Among 845 participants, the majority were extremely willing to donate to relatives (77%) while fewer than half were extremely willing to donate to non-relatives (18%). In multivariable linear regression analyses, willingness to donate varied by race-ethnicity and recipient relationship to the donor. African Americans were less willing to donate to relatives than Whites (β: −0.48; 95% CI: −0.94 to −0.17; p=0.04), but these differences were eliminated after accounting for socioeconomic factors, medical trust, and concerns about burial after death. There were no differences in willingness to donate between Hispanics and Whites.
African Americans' burial concerns, medical trust, and socioeconomic factors explained differences in their willingness to donate to relatives, suggesting efforts to address these barriers may enhance rates of live kidney donation in this group.
PMCID: PMC3795987  PMID: 23902226
live donor kidney transplantation; live kidney donation; minority donation; racial-ethnic disparities; willingness to donate live kidneys
7.  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
8.  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
9.  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
11.  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
12.  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 1-12 (12)