Community Engagement to Address Cancer Health Disparities: A Process EVALUATION using the Partnership Self-Assessment Tool.

BACKGROUND: African Americans suffer disproportionately from cancer health disparities, and population-level prevention is needed. OBJECTIVES: A community-academic partnership to address cancer health disparities in two predominately African American jurisdictions in Maryland was evaluated. METHODS: The Partnership Self-Assessment Tool (PSAT) was used in a process evaluation to assess the partnership in eight domains (partnership synergy, leadership, efficiency, management, resources, decision making, participation, and satisfaction). RESULTS: Mean scores in each domain were high, indicative of a functional and synergistic partnership. However, scores for decision making (Baltimore City's mean score = 9.3; Prince George's County's mean score = 10.8; p = .02) and participation (Baltimore City's mean score = 16.0; Prince George's County's mean score = 18.0; p = .04) were significantly lower in Baltimore City. CONCLUSIONS: Community-academic partnerships are promising approaches to help address cancer health disparities in African American communities. Factors that influence decision making and participation within partnerships require further research.

An American Thoracic Society/National Heart, Lung, and Blood Institute Workshop Report: Addressing Respiratory Health Equality in the United States.

Health disparities related to race, ethnicity, and socioeconomic status persist and are commonly encountered by practitioners of pediatric and adult pulmonary, critical care, and sleep medicine in the United States. To address such disparities and thus progress toward equality in respiratory health, the American Thoracic Society and the National Heart, Lung, and Blood Institute convened a workshop in May of 2015. The workshop participants addressed health disparities by focusing on six topics, each of which concluded with a panel discussion that proposed recommendations for research on racial, ethnic, and socioeconomic disparities in pulmonary, critical care, and sleep medicine. Such recommendations address best practices to advance research on respiratory health disparities (e.g., characterize broad ethnic groups into subgroups known to differ with regard to a disease of interest), risk factors for respiratory health disparities (e.g., study the impact of new tobacco or nicotine products on respiratory diseases in minority populations), addressing equity in access to healthcare and quality of care (e.g., conduct longitudinal studies of the impact of the Affordable Care Act on respiratory and sleep disorders), the impact of personalized medicine on disparities research (e.g., implement large studies of pharmacogenetics in minority populations), improving design and methodology for research studies in respiratory health disparities (e.g., use study designs that reduce participants' burden and foster trust by engaging participants as decision-makers), and achieving equity in the pulmonary, critical care, and sleep medicine workforce (e.g., develop and maintain robust mentoring programs for junior faculty, including local and external mentors). Addressing these research needs should advance efforts to reduce, and potentially eliminate, respiratory, sleep, and critical care disparities in the United States.

Effect of Patient Navigation on Breast Cancer Screening Among African American Medicare Beneficiaries: A Randomized Controlled Trial.

BACKGROUND: There is growing evidence that patient navigation improves breast cancer screening rates; however, there are limited efficacy studies of its effect among African American older adult women. OBJECTIVE: To evaluate the effect of patient navigation on screening mammography among African American female Medicare beneficiaries in Baltimore, MD. DESIGN: The Cancer Prevention and Treatment Demonstration (CPTD), a multi-site study, was a randomized controlled trial conducted from April 2006 through December 2010. SETTING: Community-based and clinical setting. PARTICIPANTS: The CPTD Screening Trial enrolled 1905 community-dwelling African American female Medicare beneficiaries who were ≥65 years of age and resided in Baltimore, MD. Participants were recruited from health clinics, community centers, health fairs, mailings using Medicare rosters, and phone calls. INTERVENTIONS: Participants were randomized to either: printed educational materials on cancer screening (control group) or printed educational materials + patient navigation services designed to help participants overcome barriers to cancer screening (intervention group). MAIN MEASURE: Self-reported receipt of mammography screening within 2 years of the end of the study. KEY RESULTS: The median follow-up period for participants in this analysis was 17.8 months. In weighted multivariable logistic regression analyses, women in the intervention group had significantly higher odds of being up to date on mammography screening at the end of the follow-up period compared to women in the control group (odds ratio [OR] 2.26, 95 % confidence interval [CI]1.59-3.22). The effect of the intervention was stronger among women who were not up to date with mammography screening at enrollment (OR 3.63, 95 % CI 2.09-6.38). CONCLUSION: Patient navigation among urban African American Medicare beneficiaries increased self-reported mammography utilization. The results suggest that patient navigation for mammography screening should focus on women who are not up to date on their screening.

A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients.

BACKGROUND: Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation. METHODS: To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three "acceptor" and four "decliner" focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction. RESULTS: Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making. CONCLUSION: Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.

The Relationship Between Education and Prostate-Specific Antigen Testing Among Urban African American Medicare Beneficiaries.

PURPOSE: We examined the association between socioeconomic status (SES) and prostate-specific antigen (PSA) cancer screening among older African American men. METHODS: We analyzed baseline data from a sample of 485 community-dwelling African American men who participated in the Cancer Prevention and Treatment Demonstration Trial. The outcome was receipt of PSA screening within the past year. SES was measured using income and educational attainment. Sequential multivariate logistic regression models were performed to study whether health care access, patient-provider relationship, and cancer fatalism mediated the relationship between SES and PSA screening. RESULTS: Higher educational attainment was significantly associated with higher odds of PSA screening in the past year (odds ratio (OR) 2.08 for college graduate compared to less than high school graduate, 95 % confidence interval (CI) 1.03-4.24); income was not. Health care access and patient-provider communication did not alter the relationship between education and screening; however, beliefs regarding cancer fatalism partially mediated the observed relationship. CONCLUSION: Rates of prostate cancer screening among African American men vary by level of educational attainment; beliefs concerning cancer fatalism help explain this gradient. Understanding the determinants of cancer fatalism is a critical next step in building interventions that seek to ensure equitable access to prostate cancer screening.

Examination of race disparities in physical inactivity among adults of similar social context.

OBJECTIVE: The objective of the study was to determine whether race disparities in physical inactivity are present among urban low-income Blacks and Whites living in similar social context. DESIGN: This analysis included Black and White respondents ( > or = 18 years) from the Exploring Health Disparities in Integrated Communities-Southwest Baltimore (EHDIC-SWB; N=1350) Study and the National Health Interview Survey (NHIS; N = 67790). Respondents who reported no levels of moderate or vigorous physical activity, during leisure time, over a usual week were considered physically inactive. RESULTS: After controlling for confounders, Blacks had higher adjusted odds of physical inactivity compared to Whites in the national sample (odds ratio [OR] = 1.40; 95% confidence interval [CI] =1.30-1.51). In EHDIC-SWB, Blacks and Whites had a similar odds of physical inactivity (OR = 1.09; 95% CI .86-1.40). CONCLUSION: Social context contributes to our understanding of racial disparities in physical inactivity.

State-of-the-science of patient navigation as a strategy for enhancing minority clinical trial accrual.

BACKGROUND: Patient navigation programs are emerging that aim to address disparities in clinical trial participation among medically underserved populations, including racial/ethnic minorities. However, there is a lack of consensus on the role of patient navigators within the clinical trial process as well as outcome measures to evaluate program effectiveness. METHODS: A review of the literature was conducted of PubMed, Medline, CINHAL, and other sources to identify qualitative and quantitative studies on patient navigation in clinical trials. The search yielded 212 studies, of which only 12 were eligible for this review. RESULTS: The eligible studies reported on the development of programs for patient navigation in cancer clinical trials, including training and implementation among African Americans, American Indians, and Native Hawaiians. A low rate of clinical trial refusal (range, 4%-6%) was reported among patients enrolled in patient navigation programs. However, few studies reported on the efficacy of patient navigation in increasing clinical treatment trial enrollment. CONCLUSIONS: Outcome measures are proposed to assist in developing and evaluating the efficacy and/or effectiveness of patient navigation programs that aim to increase participation in cancer clinical trials. Future research is needed to evaluate the efficacy of patient navigators in addressing barriers to clinical trial participation and increasing enrollment among medically underserved cancer patients.

Building a navigation system to reduce cancer disparities among urban Black older adults.

BACKGROUND: Although cancer outcomes have improved in recent decades, substantial disparities by race, ethnicity, income, and education persist. Increasingly, patient navigation services are demonstrating success in improving cancer detection, treatment, and care and in reducing cancer health disparities. To advance progress in developing patient navigation programs, extensive descriptions of each component of the program must be made available to researchers and health service providers. OBJECTIVE: We sought to describe the components of a patient navigation program designed to improve cancer screening based on informed decision making on cancer screening and cancer treatment services among predominantly Black older adults in Baltimore City. METHODS: A community-academic participatory approach was used to develop a patient navigation program in Baltimore, Maryland. The components of the patient navigation system included the development of a community academic (advisory) committee (CAC); recruitment and selection of community health workers (CHWs)/navigators and supervisory staff, initial training and continuing education of the CHWs/navigators, and evaluation of CHWs/navigators. The study was approved by the Johns Hopkins Bloomberg School of Public Health Institutional Review Board. CONCLUSIONS: The incorporation of community-based participatory research principles into each facet of this patient navigation program facilitated the attainment of the intervention's objectives. This patient navigation program successfully delivered cancer navigation services to 1,302 urban Black older adults. Appropriately recruited, selected and trained CHWs monitored by an experienced supervisor and investigators are the key elements in a patient navigation program. This model has the potential to be adapted by research and health service providers.

Epidemiology of lung cancer: Diagnosis and management of lung cancer, 3rd ed: American College of Chest Physicians evidence-based clinical practice guidelines.

BACKGROUND: Ever since a lung cancer epidemic emerged in the mid-1900 s, the epidemiology of lung cancer has been intensively investigated to characterize its causes and patterns of occurrence. This report summarizes the key findings of this research. METHODS: A detailed literature search provided the basis for a narrative review, identifying and summarizing key reports on population patterns and factors that affect lung cancer risk. RESULTS: Established environmental risk factors for lung cancer include smoking cigarettes and other tobacco products and exposure to secondhand tobacco smoke, occupational lung carcinogens, radiation, and indoor and outdoor air pollution. Cigarette smoking is the predominant cause of lung cancer and the leading worldwide cause of cancer death. Smoking prevalence in developing nations has increased, starting new lung cancer epidemics in these nations. A positive family history and acquired lung disease are examples of host factors that are clinically useful risk indicators. Risk prediction models based on lung cancer risk factors have been developed, but further refinement is needed to provide clinically useful risk stratification. Promising biomarkers of lung cancer risk and early detection have been identified, but none are ready for broad clinical application. CONCLUSIONS: Almost all lung cancer deaths are caused by cigarette smoking, underscoring the need for ongoing efforts at tobacco control throughout the world. Further research is needed into the reasons underlying lung cancer disparities, the causes of lung cancer in never smokers, the potential role of HIV in lung carcinogenesis, and the development of biomarkers.

Gender differences in correlates of colorectal cancer screening among Black Medicare beneficiaries in Baltimore.

BACKGROUND: Previous research has shown colorectal cancer (CRC) screening disparities by gender. Little research has focused primarily on gender differences among older Black individuals, and reasons for existing gender differences remain poorly understood. METHODS: We used baseline data from the Cancer Prevention and Treatment Demonstration Screening Trial. Participants were recruited from November 2006 to March 2010. In-person interviews were used to assess self-reported CRC screening behavior. Up-to-date CRC screening was defined as self-reported colonoscopy or sigmoidoscopy in the past 10 years or fecal occult blood testing in the past year. We used multivariable logistic regression to examine the association between gender and self-reported screening, adjusting for covariates. The final model was stratified by gender to examine factors differentially associated with screening outcomes for males and females. RESULTS: The final sample consisted of 1,552 female and 586 male Black Medicare beneficiaries in Baltimore, Maryland. Males were significantly less likely than females to report being up-to-date with screening (77.5% vs. 81.6%, P = 0.030), and this difference was significant in the fully adjusted model (OR: 0.72; 95% confidence interval, 0.52-0.99). The association between having a usual source of care and receipt of cancer screening was stronger among males compared with females. CONCLUSIONS: Although observed differences in CRC screening were small, several factors suggest that gender-specific approaches may be used to promote screening adherence among Black Medicare beneficiaries. IMPACT: Given disproportionate CRC mortality between White and Black Medicare beneficiaries, gender-specific interventions aimed at increasing CRC screening may be warranted among older Black patients.

Cancer support and resource needs among African American older adults

Older African Americans face substantial barriers to state-of-the-art cancer care. Implementing culturally appropriate support throughout cancer therapy is critical to improving cancer outcomes and quality of life for this vulnerable population. The purpose of this study was to obtain experiential data regarding cancer diagnosis and treatment, and analyze survivors' recommendations regarding treatment-related needs, psychosocial support, and strategies and resources. Four main issues emerged from the study: (a) the need for more health-related and cancer-specific education, (b) the importance of faith and spirituality, (c) the availability of support, and (d) participants' difficulty identifying and articulating financial needs. Few participants reported requesting or receiving assistance (financial or otherwise) outside of the family during their cancer experience. However, treatment-related medication costs posed a significant hardship for many.

Fast and accurate inference of local ancestry in Latino populations.

MOTIVATION: It is becoming increasingly evident that the analysis of genotype data from recently admixed populations is providing important insights into medical genetics and population history. Such analyses have been used to identify novel disease loci, to understand recombination rate variation and to detect recent selection events. The utility of such studies crucially depends on accurate and unbiased estimation of the ancestry at every genomic locus in recently admixed populations. Although various methods have been proposed and shown to be extremely accurate in two-way admixtures (e.g. African Americans), only a few approaches have been proposed and thoroughly benchmarked on multi-way admixtures (e.g. Latino populations of the Americas). RESULTS: To address these challenges we introduce here methods for local ancestry inference which leverage the structure of linkage disequilibrium in the ancestral population (LAMP-LD), and incorporate the constraint of Mendelian segregation when inferring local ancestry in nuclear family trios (LAMP-HAP). Our algorithms uniquely combine hidden Markov models (HMMs) of haplotype diversity within a novel window-based framework to achieve superior accuracy as compared with published methods. Further, unlike previous methods, the structure of our HMM does not depend on the number of reference haplotypes but on a fixed constant, and it is thereby capable of utilizing large datasets while remaining highly efficient and robust to over-fitting. Through simulations and analysis of real data from 489 nuclear trio families from the mainland US, Puerto Rico and Mexico, we demonstrate that our methods achieve superior accuracy compared with published methods for local ancestry inference in Latinos.

Exploring cancer support needs for older African-American men with prostate cancer.

PURPOSE: The purpose of this study was to explore cancer support and financial issues related to cancer care experienced by African-American men with prostate cancer and to understand whom they relied on for resource issues during diagnosis and treatment. METHODS: This is a descriptive qualitative study of 23 rural and urban 65 years old and older African-American prostate cancer survivors. Five focus groups were conducted containing African-American prostate cancer survivors who were recruited from community-based centers (e.g., churches, barbershops, diners, and primary care clinics) in central Virginia and Maryland. Focus group discussions were audiotaped, transcribed, and coded. Data were organized and managed using a qualitative analysis software program. Emerging themes uncovered specific problems for older rural African-American men with cancer, and focus group data were examined for potential solutions to these problems. RESULTS: Two common themes emerged: (1) family and physician support are important, and (2) insurance is a necessity for appropriate health care. A difference between rural and urban African-American prostate cancer survivors emerged as well: difference in spirituality during diagnosis and treatment. CONCLUSIONS: Rural and urban African-American prostate cancer survivors' major support resource was their wives. Health insurance played a critical role as a support source by decreasing anxiety and financial hardships. Understanding rural and urban African-American prostate cancer survivors' support needs and challenges in relation to cancer diagnosis and treatment will allow nurses and other health-care providers to tailor cancer health plans more effectively for this population.

The impact of insurance on access to cancer clinical trials at a comprehensive cancer center.

PURPOSE: Cancer patients at Johns Hopkins undergo insurance clearance to verify coverage for enrollment to interventional clinical trials. We sought to explore the impact of insurance clearance on disparities in access to cancer clinical trials at this urban comprehensive cancer center. EXPERIMENTAL DESIGN: We evaluated the frequency of insurance-based denial of access to cancer clinical trials over a 5-year period after initiation of a formal insurance clearance process. We used a case-control design to compare demographic and clinical parameters of patients denied or approved for clinical trials participation by their insurance company in a 3-year interval. RESULTS: From July 2003 to July 2008, insurance requests for clinical trial participation were submitted on 4,617 consented cancer patients at Johns Hopkins. A total of 628 patients (13.6%) with health insurance were denied therapeutic trial enrollment owing to lack of insurance coverage for participation. A total of 254 patients denied enrollment from 2005 to 2007 were selected for further analysis. Two-hundred sixty randomly selected patients approved for clinical trial participation served as controls. Patients approved were on average older (59.2 versus 54.9 years) than patients denied (P = 0.0001). Residents of Pennsylvania, which lacks a state law mandating cancer clinical trial coverage for residents, were overrepresented among the denied patients (P = 0.0009). No statistically significant variance in the likelihood of insurance denial was found on the basis of sex, race, stage of disease, or presence of comorbidities. CONCLUSIONS: Denial of access to therapeutic clinical trials, even among insured patients, is a significant barrier to clinical cancer research. This barrier spans racial, ethnic, and gender categories.

Applying justice in clinical trials for diverse populations.

BACKGROUND: Considerable attention has focused on increasing clinical trial participation for members of "underrepresented groups". However, doing so involves clarifying how to meet the demands of justice, or fairness, which provides the ethical mandate to enhance broad trial representation. PURPOSE: To examine the ethical principle of justice as it applies to recruiting diverse populations to clinical trials representation. METHODS: In this paper, we analyse the conceptual and practical challenges in applying the principle of justice to clinical trials representation. RESULTS: Different facets of justice include demands for both fair outcomes and fair processes. Including both of these facets in clinical trials policy should not only promote access to trials, but also help to provide a framework to improve fairness in representation in clinical trials. Efforts to evaluate recruitment of representation should include outcome and process measures. LIMITATIONS: The suggestions offered based on this conceptual analysis need to be tested empirically. CONCLUSIONS: Those involved in the design, conduct and oversight of clinical trials should consider all of the facets of justice when assessing representation in clinical trials and attempt to balance fair access to trials with a fair process that may require protection from being unduly pressured to participate.

A culturally targeted intervention to promote breast cancer screening among low-income women in East Baltimore, Maryland.

In Maryland, outreach initiatives have been unsuccessful in engaging low-income African American women in mammography screening. This study aimed to identify factors influencing screening rates for low-income African American women. Based on the Health Belief Model, a modified time series design was used to implement a culturally targeted intervention to promote a no-cost mammography-screening program. Data were collected from women 40 years of age and older on their history of mammography use and their knowledge and beliefs about breast cancer. A 50% screening rate was achieved among 119 eligible participants. Significant predictors of screening behaviors were perceived barriers, lack of insurance, and limited knowledge. This culturally targeted intervention resulted in an unprecedented screening rate among low-income African American women in Baltimore, Maryland.