[Show abstract][Hide abstract] ABSTRACT: The Centers for Population Health and Health Disparities program promotes multilevel and multifactorial health equity research and the building of research teams that are transdisciplinary. We summarized 5 areas of scientific training for empowering the next generation of health disparities investigators with research methods and skills that are needed to solve disparities and inequalities in cancer and cardiovascular disease. These areas include social epidemiology, multilevel modeling, health care systems or health care delivery, community-based participatory research, and implementation science. We reviewed the acquisition of the skill sets described in the training components; these skill sets will position trainees to become leaders capable of effecting significant change because they provide tools that can be used to address the complexities of issues that promote health disparities. (Am J Public Health. Published online ahead of print April 23, 2015: e1-e8. doi:10.2105/AJPH.2014.302489).
American Journal of Public Health 04/2015; 105(S3):e1-e8. DOI:10.2105/AJPH.2014.302489 · 4.23 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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 transdisciplinary 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, postdoctoral fellows, and predoctoral students interested in conducting CVD disparities research. A CVD Disparities Summer Internship Program for undergraduate and preprofessional 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 predoctoral, postdoctoral, 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, one postbaccalaureate, and two 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.
Academic medicine: journal of the Association of American Medical Colleges 07/2014; 89(10). DOI:10.1097/ACM.0000000000000426 · 3.47 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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.RESEARCH DESIGN AND METHODS: 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.RESULTS: 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).CONCLUSIONS: 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.
Diabetes Care 07/2014; 37(7):2055-2062. DOI:10.2337/dc13-2527 · 8.57 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: As more studies report on patient preferences, techniques are needed to identify, assess and, eventually, synthesize results from a diverse set of methodologies. Data on patient preferences are valuable to decision makers in a variety of ways. Preferences for outcomes can be used to inform decision and cost-effectiveness models, while preferences for treatments can inform patient-centered outcomes research (PCOR) and patient-centered care.
This project sought to identify and assess the literature reporting on the treatment preferences of adult patients with type 2 diabetes. In addition to cataloging the preference elicitation methods used, we developed and assessed a novel quality assessment checklist for preference-based studies.
PubMed, EMBASE, CINAHL, and EconLit databases were searched to identify studies examining patient preferences for medications for type 2 diabetes studies published since inception of each database.
The review protocol specified inclusion of studies reporting diabetes-treatment preferences among adults with type 2 diabetes, using a range of preference measurement methods. Studies were excluded if participants were not patients with type 2 diabetes and if treatments were not pharmacological therapies targeting glycemic control, or if no primary preference information was collected. Two investigators independently reviewed titles, abstracts, and articles sequentially to select studies for data abstraction based on the inclusion and exclusion criteria. Disagreements were resolved by consensus.
Data on study country, year, number of respondents, preference elicitation method, number of attributes, subgroup analyses, and funding source were abstracted into standardized tables. A novel checklist (PREFS) was used to assess the data quality and validity across different types of preference studies by assessing the following: purpose of the study; respondent sampling; explanation of preference assessment methods; findings reported for total sample; and significance testing. Each item was scored, and an aggregate score was then calculated (ranging from 0 to 5).
Of the 2,100 unique citations, 61 met the inclusion criteria. The studies used conjoint analysis (n = 10), time trade-off (n = 6), standard gamble (n = 2), contingent valuation (n = 1), other stated preference methods (n = 39), and revealed preferences (n = 5). Sample sizes ranged from 27 to 14,033, with an average of 562 respondents, and two-thirds included a subgroup analysis. Most studies were conducted in one country, predominantly the USA (n = 27), UK (n = 14), Canada (n = 10), and Germany (n = 7), while 14 were conducted in multiple (2-18) countries across two or more countries. There was an increase in the annual rate of studies published over time from the time of the first publication in 1985 (p = < 0.01). Most (n = 52) studies were funded by pharmaceutical or device companies, with government, academic, association, and hospital sources also funding studies. One study met all five of the PREFS criteria and 12 met four; yet four studies met none of the criteria. The average was 27.
Currently, preferences reviews are limited by the mixed quality in the reporting of studies, the publication bias inherent in the literature, a lack of guidelines to conduct various methods, and the difficulty of synthesizing results from different studies. Our study is also limited by its focus on English language articles.
This study provides the first systematic evaluation of the methods used in the broad existing body of research into patient preferences for type 2 diabetes medications and can serve as a primary source of information for decision makers. Future work is necessary to assess the utility of the results of reviews of preference information and to develop best-practice guidelines for the reporting of, and methods of conducting, preference studies and systematic reviews of such studies.
This systematic review was registered with PROSPERO (registration number CRD42012002285).
[Show abstract][Hide abstract] ABSTRACT: 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 [Confidence Interval]: -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.
[Show abstract][Hide abstract] ABSTRACT: BACKGROUND: A comprehensive assessment of the association of patients' renal replacement therapy (RRT) modality with their participation in life activities (physical function, travel, recreation, freedom, and 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. PREDICTOR: RRT modality. OUTCOMES: Reported rates of physical function, travel, recreation, freedom, and work-related activities by RRT modality. RESULTS: 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 in 1985-2011 among diverse patient populations in 16 distinct locations. A majority of studies reported greater life participation rates for patients with kidney transplants compared with 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. LIMITATIONS: Many studies included in the review had significant design weaknesses. CONCLUSIONS: Evidence suggests that patients with kidney transplants may experience better rates of life participation compared with patients receiving dialysis, whereas 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 with these important patient-reported outcomes.
American Journal of Kidney Diseases 05/2013; 62(5). DOI:10.1053/j.ajkd.2013.03.022 · 5.76 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Few studies have compared determinants of live donor kidney transplantation (LDKT) across all major US racial-ethnic groups. We compared determinants of racial-ethnic differences in LDKT among 208 736 patients who initiated treatment for end-stage kidney disease during 2005-2008. We performed proportional hazards and bootstrap analyses to estimate differences in LDKT attributable to sociodemographic and clinical factors. Mean LDKT rates were lowest among blacks (1.19 per 100 person-years [95% CI: 1.12-1.26]), American Indians/Alaska Natives-AI/ANs (1.40 [1.06-1.84]) and Pacific Islanders (1.10 [0.78-1.84]), intermediate among Hispanics (2.53 [2.39-2.67]) and Asians (3.89 [3.51-4.32]), and highest among whites (6.46 [6.31-6.61]). Compared with whites, the largest proportion of the disparity among blacks (20%) and AI/ANs (29%) was attributed to measures of predialysis care, while the largest proportion among Hispanics (14%) was attributed to health insurance coverage. Contextual poverty accounted for 16%, 4%, 18%, and 6% of the disparity among blacks, Hispanics, AI/ANs and Pacific Islanders but none of the disparity among Asians. In the United States, significant disparities in rates of LDKT persist, but determinants of these disparities vary by race-ethnicity. Efforts to expand preESKD insurance coverage, to improve access to high-quality predialysis care and to overcome socioeconomic barriers are important targets for addressing disparities in LDKT.
American Journal of Transplantation 05/2013; 13(6). DOI:10.1111/ajt.12258 · 6.19 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Background
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.
[Show abstract][Hide abstract] ABSTRACT: 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.
[Show abstract][Hide abstract] ABSTRACT: High-quality provider-patient decision-making is key to quality care for complex conditions. We performed an analysis of key elements relevant to quality and complex, shared medical decision-making. Based on a search of electronic databases, including Medline and the Cochrane Library, as well as relevant articles' reference lists, reviews of tools, and annotated bibliographies, we developed a list of key concepts and applied them to a decision-making example. Key concepts identified included provider competence, trustworthiness, and cultural competence; communication with patients and families; information quality; patient/surrogate competence; and roles and involvement. We applied this concept list to a case example, shared decision-making for live donor kidney transplantation, and identified the likely most important concepts as provider and cultural competence, information quality, and communication with patients and families. This concept list may be useful for conceptualizing the quality of complex shared decision-making and in guiding research in this area.
Social Science [?] Medicine 02/2012; 74(4):582-7. DOI:10.1016/j.socscimed.2011.11.015 · 2.56 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Background: Despite older adults' and racial/ethnic minorities' greater need for live kidney transplants (LKT) to treat the epidemic of life-threatening end stage renal disease, they are less likely to receive donated kidneys from others. Reasons for disparities in live kidney donation among older adults and minorities are poorly understood.
Methods: In a national study, we assessed potential age and racial/ethnic disparities in willingness to donate live kidneys. Participants rated their willingness (0 (least) to 10 (most)) to donate to relatives (parent/child/sibling/spouse) or non-relatives (friend/celebrity/stranger). We assessed racial/ethnic and age differences in willingness and mediation of differences by attitudes of medical mistrust and religiosity.
Results: Among 845 participants (mean age 45 years; 12% African American (AA), 15% Hispanic), more stated they were extremely willing (rating=10) to donate to relatives (90%) than non-relatives (43%). After multivariable adjustment, older age was associated with less willingness to donate to relatives (β: -0.0167, p<0.01). AAs age 51-65 were less willing to donate than their White counterparts (β: -0.7664, p<0.05); and AAs and Hispanics age >65 were less willing to donate than Whites (β: -0.90 and -1.836, respectively, p<0.05). Mistrust and religiosity were associated with less willingness to donate among older minorities and significantly attenuated differences in willingness to donate among older AAs but not Hispanics when added to models.
Conclusion: Disparities in willingness to donate among older racial/ethnic minorities may contribute to less LKT in these populations. Efforts to address mistrust and religious concerns, particularly among older AAs, could improve access to LKT.
139st APHA Annual Meeting and Exposition 2011; 10/2011
[Show abstract][Hide abstract] ABSTRACT: 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 (nondesignators) 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. Nondesignators 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 nondesignators' donation rates.
Transplant International 07/2011; 24(10):999-1007. DOI:10.1111/j.1432-2277.2011.01301.x · 3.16 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: 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 health care 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, using LDKT kidneys more efficiently, and reducing surgical and financial barriers to transplant. Future directions to increase awareness of LDKT for more racial/ethnic minorities also are 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.
Seminars in Nephrology 01/2010; 30(1):90-8. DOI:10.1016/j.semnephrol.2009.10.010 · 2.94 Impact Factor