Background: Racial and ethnic minorities are under-represented participants in health-related research. Comprehension and understanding of the research process are a barrier to research participation. A potential approach to engaging underserved populations in research is through improving research literacy, which we define as “the capacity to obtain, process and understand basic information needed to make informed decisions about research participation.” Methods: Through primary data collection and mixed-methods approaches, this doctoral thesis seeks to: 1) define and conceptualize the domains, determinants, and impacts of research literacy through the development of a multi-component comprehensive framework, 2) operationalize research literacy by developing and psychometrically testing the Research Literacy Scale, and 3) quantify differences in research literacy, measured by the Research Literacy Scale, by race/ethnicity, race-related factors, and other socio-demographic factors. Results: We created a framework outlining eight domains of research literacy and multi-faceted influences of societal, community, researcher, and participant factors that may influence an individual’s level of research literacy. The Research Literacy Scale created is comprised of 16 items, with a KR-20 estimate of 0.81 and test-retest reliability of 0.84. We found differences in mean scale scores by race/ethnicity, age, education, income, and health literacy (all p < 0.01). African-Americans and Latinos have lower research literacy scores, as compared to non-Latino Whites. Race-consciousness was associated with research literacy score. Conclusions: This study is the first to define, assess, and quantify factors associated with research literacy in a diverse community sample and may provide insights on approaches to enhance minority engagement in health-related research.

An emerging framework, the Identity Pathology (IP) model, partially addresses persistent uncertainties about the primary causes of disparities in cardiovascular health (CVH) between black and white women and men through outlining how identity beliefs associated with social group membership lead to predictable differences in the health-damaging effects of discrimination exposure. Using data from the CARDIA cohort, this doctoral thesis seeks to: 1) propose a novel psychosocial characteristic, identity pathology, that drives the distribution of reported race and gender discrimination in health-relevant ways, 2) assess whether there are group differences in the effects of multiple versus single forms of discrimination on future CVH, and 3) assess variation between these groups in the relationships of reported racial and gender discrimination in a variety of daily life settings with future CVH. The IP framework suggests that beliefs about identity unique to each gendered race group influence the perception of discrimination and whether reported exposure will be associated with CVH. Simultaneous reports of racial and gender discrimination in multiple settings (compared with no discrimination) were negatively associated with future CVH only among white men. Further, the setting in which discrimination was reported appeared to be a significant indicator of whether experiencing multiple forms of discrimination negatively impacted CVH in each group. Our findings contribute to the literature through introducing a novel framework for assessing the effects of interpersonal discrimination. This work also provides preliminary evidence that compounded experiences of interpersonal racial and gender discrimination may not substantially contribute to poorer CVH among black women.

Background: Traumatic injury remains a major cause of mortality in the US. Older Americans experience lower rates of injury and higher rates of death at lower injury severity than their younger counterparts. The objectives of this study were to explore pre-injury factors and injury patterns that are associated with post-discharge mortality among injured elderly surviving index hospitalization. Methods: We queried a 5% random sample of Medicare beneficiaries (n=2,002,420) for any hospitalization with a primary ICD-9 diagnosis code for injury. Patients admitted without urgent/emergent admission were excluded, as well as patients presenting from inpatient hospitalization or rehabilitation. The primary endpoint was all-cause mortality. Patients were categorized into three mortality groups: death within 0-30 days, 31-90 days, or 91- 365 days post-discharge from the index hospitalization. These groups were compared with those who survived greater than one year post-discharge. Univariate tests of association and multivariable logistic regression models were utilized to identify factors associated with mortality during the 3 examined periods. Results: 83,439 elderly patients (4.2%) were admitted with new injuries. 63,628 met inclusion criteria. 1,936 patients (3.0%) died during their index hospitalization, 2,410 (3.8%) died within 0-30 days, 3,084 (4.8%) died within 31-90 days, and 5,718 (9.0%) died within 91- 365 days after discharge. In multivariable adjusted models, advanced age, male sex, and higher Elixhauser score were associated with post-discharge mortality. The presence of critical injury had the greatest effect on mortality early after injury (0-30 days, OR 1.81, CI 1.64-2.00). Discharge to anywhere other than home without services was associated with an increased odds of dying. Conclusions: Socio-demographic characteristics, disposition, and co-morbid factors were the strongest predictors of post-discharge mortality. Efforts to reduce injury-related mortality should focus on injury prevention and modification of co-morbidities.

Since the Institute of Medicine highlighted the devastating impact of medical errors in their seminal report, “To Err is Human” (2000), efforts have been underway to improve patient safety. A portion of medical errors are due to medication errors, and a large portion of these can be attributed to inadequate laboratory monitoring. In this thesis, I attempt to address this small but important corner of this patient safety endeavor. Why are patients not getting their laboratory monitoring tests? Do they fail to complete them or do doctors not order the tests in the first place? Which prescribers and which patients are least likely to do what is needed for testing to happen and what interventions would be most promising? To address these questions, I conducted a systematic review of existing interventions. I then proceeded with three aims: 1) To identify reasons that patients give for missing monitoring tests; 2) To identify patient and provider factors associated with monitoring test ordering; and 3) To identify patient and provider factors associated with completion of ordered testing. To achieve these aims, I worked with patients and data at the Fallon Clinic. For aim 1, I conducted a qualitative analysis of their reasons for missing tests as well as reporting completion and ordering rates. For aims 2 and 3, I used electronic medical record data and conducted a regression with patient and provider characteristics as covariates to identify factors contributing to test ordering and completion. Interviews revealed that patients had few barriers to completion, with forgetting being the most common reason for missing a test. The quantitative studies showed that: older patients with more interactions with the health care system were more likely to have tests ordered and were more likely to complete them; providers who more frequently prescribe a drug were more likely to order testing for it; and drug-test combinations that were particularly dangerous, indicated by a black box warning, were more likely to have appropriate ordering, though for these combinations, primary care providers were less likely to order tests appropriately, and patients were less likely to complete tests. Taken together, my work can inform future interventions in laboratory monitoring and patient safety.

Background Acute coronary syndromes (ACS) are a major cause of mortality and morbidity in the developed world. By 2020, ACS will be the leading cause of morbidity and mortality worldwide, largely due to substantial increases in ACS burden in developing countries. The developing world has been under-represented in international ACS registries. The Arabian Gulf area is a part of the developing world where little is known about the epidemiology of ACS. The first aim of the dissertation is to compare ACS patient characteristics, current practice patterns, and in-hospital outcomes in the Arabian Gulf area to a large multinational sample. Patients with an ACS suffer numerous clinical complications that worsen their prognosis. Cardiogenic shock (CS) is the most serious complication of ACS and the leading cause of in-hospital death. Despite advances in therapies; CS hospital mortality rates continue to exceed 50%. The second aim of the dissertation is to describe the characteristics of patients presenting with ACS complicated by cardiogenic shock, their management, and outcomes in a large multinational sample. In recent years, ACS has been increasingly affecting younger patients. While marked age-related differences have been observed in the risk of developing as well as the prognosis of ACS, few studies however examined time trends in the epidemiology of ACS in young adult patients. The third aim of the dissertation is to examine trends in frequency rates, patient characteristics, treatment practices, and outcomes in young adults hospitalized with an ACS. Methods Data from two large multinational registries of patients hospitalized with an ACS were used for this investigation. Nearly 65,000 patients were enrolled in the Global Registry of Acute Coronary Events (GRACE) between 2000 and 2007, while 6,700 patients participated in the Gulf Registry of Acute Coronary Events (Gulf RACE) in 2007. Results Aim1: Patients in Gulf RACE were significantly younger and were more likely to be male, diabetic, and smoke Compared to GRACE. Patients in Gulf RACE were less likely to receive evidence based therapies. Short-term mortality rates were comparable between the two patient cohorts. Aim2: Compared to patients with no CS, patients with CS were more likely to be older, female, have a history of diabetes, and heart failure. Patients with CS were less likely to receive effective cardiac catheterization and adjunctive cardiac medications. In-hospital case-fatality rate of patients with CS were 59.4%. While in-hospital mortality declines over the study period, incidence rates only showed minor declines. Aim2: Baseline characteristics of patients < 55 years of age did not significantly change, while the use of evidence based therapies increased significantly during the years under study. Rates of short-term adverse outcomes and mortality significantly declined over time. Conclusions We observed marked regional differences in the risk profile, clinical management, and outcomes of patients with an ACS internationally compared to the Arab Middle East. Despite the encouraging trends in the use of evidence based therapies which have likely contributed to the improving trends in the prognosis of ACS, rates of development of ACS, as well as mortality due to ACS complications, remain high.

The Institute for Healthcare Improvement (IHI) has promoted implementing a RRS to provide safer care for hospitalized patients. Additionally, the Joint Commission made implementing a RRS a 2008 National Patient Safety Goal. Although mandated, the evidence to support the effectiveness of a RRS to reduce cardiac arrests on hospital medical or surgical floors and un-anticipated ICU transfers remains inconclusive, partly because of weak study designs and partly due to a failure of published studies to report all critical aspects of their intervention. This study attempted to evaluate the effectiveness and the implementation of a RRS on the two campuses of the UMass Memorial Medical Center (UMMMC). The first study presented was an attempt to identify the preventability and timeliness of floor to ICU transfers. This was done using 3 chief residents who reviewed 100 randomly selected medical records. Using Cohen’s kappa to assess the inter-rater reliability it was determined that 13% of the cases could have possibly been preventable with earlier intervention. The second study was an evaluation of the effectiveness of the Rapid Response System. Outcomes were cardiac arrests, code calls and floor to ICU admissions. There were two study periods 24 months before the intervention and 24 months after. A Spline regression model was used to compare the two time periods. Though there was a consistent downward trend over all 4 years there were no statistically significant changes in the cardiac arrests and ICU transfers when comparing the before and after periods. There was a significant reduction in code calls to the floors on the University campus. The third study was a modified process evaluation of the Rapid Response intervention that will assess fidelity of RRS implementation, the proportion of the intended patient population that is reached by the RRS, the overall number of RRS calls implemented (dose delivered) and the perceptions of the hospital staff affected by the RRS with respect to acceptability and satisfaction with the RRS and barriers to utilization. The process evaluation showed that that the Rapid Response System was for the most part being used as it was designed, though the nurses were not using the specific triggers as a deciding factor in making the call. Staff satisfaction with the intervention was very high. Overall these studies demonstrated the difficulty in clearly defining outcomes and data collection in a large hospital system. Additionally the importance of different study designs and analysis methods are discussed.

Depression is the leading cause of disability among women of reproductive age worldwide. Upwards of 1 in 5 women suffer from perinatal depression. This condition has deleterious effects on several birth outcomes, infant attachment, and children’s behavior/development. Maternal suicide causes 20% of postpartum deaths in depressed women. Although the vast majority of perinatal women are amenable to being screened for depression, screening alone does not improve treatment rates or patient outcomes. Obstetrics/Gynecology (Ob/Gyn) clinics need supports in place to adequately address depression in their patient populations. The primary goal of this thesis is to develop, refine, and pilot test a new low-cost and sustainable stepped care program for Ob/Gyn clinics that will improve perinatal women’s depression treatment rates and outcomes. We developed and beta tested the Rapid Access to Perinatal Psychiatric Care in Depression (RAPPID) Program, to create a comprehensive intervention that is proactive, multifaceted, and practical. RAPPID aims to improve perinatal depression treatment and treatment response rates through: (1) access to immediate resource provision/referrals and psychiatric telephone consultation for Ob/Gyn providers; (2) clinic-specific implementation of depression care, including training support and toolkits; and (3) proactive depression screening, assessment, and treatment in OB/Gyn clinics. RAPPID builds on a low-cost and widely disseminated population-based model for delivering psychiatric care in primary care settings. Formative data and feedback from key stakeholders also informed the development of RAPPID. Our formative and pilot work in real-world settings suggests RAPPID is feasible and has the potential to improve depression detection and treatment in Ob/Gyn settings. The next step will be to compare two active interventions, RAPPID vs. enhanced usual care (access to resource provision/referrals and psychiatric telephone consultation) in a cluster-randomized trial in which we will randomize 12 Ob/Gyn clinics to either RAPPID or enhanced usual care.

Purpose: This qualitative descriptive study was undertaken to describe Eastern Woodlands Native adult perspectives, health care beliefs and type 2 diabetes management experiences. Specific Aims: The specific aims were to 1) explore and describe perceptions of type 2 diabetes among Eastern Woodland Native adults and how they relate to their understandings about the cause and treatment approaches to the disease, 2) describe how family, friends, and community intersect with type 2 diabetes management, 3) describe relationships with health care providers and 4) determine resources that would help diabetes-self management within their community. Framework: The PEN-3 Model by Airhihenbuwa was the initial framework used for the study. Methods: A qualitative descriptive design with maximum variation and snowball sampling was used and data was analyzed using qualitative content analysis. Results: The overarching theme of Together We Can Return To Balance comprised five sub-themes: Coming to Know Life Paths with T2DM, Negotiating My Way Forward, Making Important Connections, Acknowledging the Imbalance, and Sticking Closer to Mother Earth illustrating physical, spiritual, and environmental health factors influencing DSM capacities. Conclusion: Native perspectives should be viewed as a crucial contextual variation for type 2 diabetes care when developing DSMES and for improving DSM capacities in these populations.

Introduction: In recent years, high quality contraceptive care for adolescents has shifted away from tiered effectiveness counseling and toward youth-friendly, patient-centered counseling (YFPCCC). YFPCCC is essential in the South, which has higher rates of sexual activity, lower rates of contraception use, and higher teen birth rates. This study examined Southern clinics’ characteristics which support YFPCCC and youth’s perceptions of the contraceptive care they receive. Methods: This mixed methods study examined secondary data collected in two surveys and primary data collected through key-informant interviews. The first survey examined clinic characteristics impacting YFPCCC, and the second survey examined adolescents’ (aged 16-24) perspectives of their care. For each survey, outcome measures were dichotomized and examined through logistic regression models. Lastly, interviews with administrators at FQHCs and HDs in AL and SC and examined the facilitators and barriers to providing YFPCCC in these clinics. Results: FQHCs were 89% less likely to notify youth of their right to confidentiality (aOR 0.11, 95% CI (0.05, 0.26)) and 80% less likely to notify youth of their right to consent to care (aOF 0.20, 95% CI (0.10, 0.40)). Non-Hispanic Black youth were 47% less likely to receive patient-centered contraceptive care (aOR 0.53, 95% CI (0.40, 0.70)). Minor youth (ages 16-17) were 34% less likely to receive patient-centered contraceptive care (ages 20-24) (aOR 0.66, 95% CI (0.45, 0.98)). Clinic administrators noted the continued use of tiered effectiveness counseling. SC administrators noted that minor youth were allowed to consent to receiving the implant but could not consent to removing it. Discussion: Overall, clinic capacity to provide YFPCCC varied by clinic type, with FQHCs less likely to have notify youth of their rights to consent to and receive confidential contraceptive care. The receipt of YFPCCC varied by youth’s age and race/ethnicity, with minors and non-Hispanic Black youth being less likely to report YFPCCC. Clinic administrators noted that they continue to use the tiered effectiveness model of counseling, which may inadvertently pressure or coerce youth. To improve their capacity to provide YFPCCC, clinics should enhance their policies protecting consent and confidentiality and ensure that their providers are trained in patient-centered contraceptive care for youth.

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