Recruiting diversity where it exists: The Alabama Genomic Health Initiative.

Lack of diversity among genomic research participants results in disparities in benefits from genetic testing. To address this, the Alabama Genomic Health Initiative employed community engagement strategies to recruit diverse populations where they lived. In this paper, we describe our engagement techniques and recruitment strategies, which resulted in significant improvement in representation of African American participants. While African American participation has not reached the representation of this community as a percentage of Alabama's overall population (26%-27%), we have achieved an overall representation exceeding 20% for African Americans. We believe this demonstrates the value of engagement and recruitment where diverse populations reside.

The self-care practices of family caregivers of persons with poor prognosis cancer: differences by varying levels of caregiver well-being and preparedness.

PURPOSE: Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. METHODS: Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy. RESULTS: Caregivers (n = 294) averaged 66 years, were mostly female (72.8%), white (91.2%), Protestant (76.2%), retired (54.4%), and patients' spouse/partner (60.2%). Approximately, half were rural-dwellers (46.9%) with incomes <$50,000 (53.8%). Most provided support 6-7 days/week (71%) for >1 year (68%). Nearly a quarter (23%) reported high depression and 34% reported borderline or high anxiety. Low engagement in all self-care practices was associated with worse caregiver anxiety, depression, and mental HRQoL (all p values < .05). Caregivers with lower health responsibility, spiritual growth, interpersonal relation, and stress management scores had lower preparedness and decision-making self-efficacy. CONCLUSIONS: A significant proportion of caregivers simultaneously report low engagement in all forms of self-care practices, high depression and anxiety, and low HRQoL mental health scores. Caregiver well-being, preparedness, and decision-making self-efficacy might be optimized through interventions targeted at enhancing health responsibility, stress management, interpersonal relationships, and spiritual growth self-care practices.

Guiding Lay Navigation in Geriatric Patients With Cancer Using a Distress Assessment Tool.

BACKGROUND: There is growing interest in psychosocial care and evaluating distress in patients with cancer. As of 2015, the Commission on Cancer requires cancer centers to screen patients for distress, but the optimal approach to implementation remains unclear. METHODS: We assessed the feasibility and impact of using distress assessments to frame lay navigator interactions with geriatric patients with cancer who were enrolled in navigation between January 1, 2014, and December 31, 2014. RESULTS: Of the 5,121 patients enrolled in our lay patient navigation program, 4,520 (88%) completed at least one assessment using a standardized distress tool (DT). Navigators used the tool to structure both formal and informal distress assessments. Of all patients, 24% reported distress scores of 4 or greater and 5.5% reported distress scores of 8 or greater. The most common sources of distress at initial assessment were pain, balance/mobility difficulties, and fatigue. Minority patients reported similar sources of distress as the overall program population, with increased relative distress related to logistical issues, such as transportation and financial/insurance questions. Patients were more likely to ask for help with questions about insurance/financial needs (79%), transportation (76%), and knowledge deficits about diet/nutrition (76%) and diagnosis (66%) when these items contributed to distress. CONCLUSIONS: Lay navigators were able to routinely screen for patient distress at a high degree of penetration using a structured distress assessment.

Cancer-related Beliefs and Preventive Health Practices among Residents of Rural versus Urban Counties in Alabama.

Higher prevalence of cancer-related risk factors, for example, tobacco use, obesity, poor diet, and physical inactivity, is observed in the U.S. Deep South and likely contributes to its increased cancer burden. While this region is largely rural, it is unknown whether cancer-related beliefs and lifestyle practices differ by rural-urban status or are more influenced by other factors. We contacted 5,633 Alabamians to complete a cross-sectional survey to discern cancer-related beliefs and lifestyle practices, and compared data from respondents residing in rural- versus urban-designated counties. Findings were summarized using descriptive statistics; rural-urban subgroups were compared using two-tailed, χ 2 and t tests. Multivariable logistic regression models were used to explore associations by rural-urban status and other sociodemographic factors. Surveys were completed by 671 rural- and 183 urban-county respondents (15.2% response rate). Overall, the prevalence for overweight and obesity (77.8%) and sugar-sweetened beverage intake (273-364 calories/day) was higher than national levels. Most respondents (58%) endorsed raising the state tobacco tax. Respondents from rural- versus urban-designated counties were significantly more likely to be racial/ethnic minority, have lower education, employment, income, food security, and internet access, and endorse fatalistic cancer-related beliefs (<0.05; although regression models suggested that cancer belief differences are more strongly associated with education than counties of residence). Lifestyle practices were similar among rural-urban subgroups. Few rural-urban differences in cancer-related beliefs and lifestyle practices were found among survey respondents, although the high overall prevalence of fatalistic health beliefs and suboptimal lifestyle behaviors suggests a need for statewide cancer prevention campaigns and policies, including increased tobacco taxation.Prevention Relevance: Cancer incidence and mortality are higher in the U.S. Deep South, likely due to increased tobacco-use, obesity, poor diet, and physical inactivity. This study explores whether cancer-related beliefs and lifestyle practices differ by rural-urban status or other sociodemographic factors in a random sample of 855 residents across Alabama.

Lay navigation across the cancer continuum for older cancer survivors: Equally beneficial for Black and White survivors?

OBJECTIVES: The Patient Care Connect Program (PCCP), through lay navigators' distress assessments and assistance, was shown to lower healthcare utilization and costs in older cancer survivors. PCCP benefits and assistance needs for disadvantaged minorities (e.g., Black) vs. Whites are unknown. MATERIALS AND METHODS: We examined the PCCP impact with retrospective analyses of Medicare claims (2012-2015). Outcomes were quarterly costs and utilization (emergency room (ER), hospitalizations) for navigated and matched survivors. Repeated measures generalized linear models with normal (costs), and Poisson (utilization) distributions assessed differences in trends overall and separately for Blacks and Whites. With distress data for navigated survivors, we assessed high distress (score > 3), ≥1 distress cause (overall, by domain), and ≥ 1 assistance request by minority group. RESULTS: Beneficiaries were: 772 Black and 5350 White navigated, and 770 Black and 5348 White matched survivors. Impact was: i) costs: -$557.5 Blacks (p < .001), -$813.4 Whites (p < .001); ii) ER: Incidence Rate Ratio (IRR) 0.97 Blacks (NS), 0.93 Whites (p < .001); iii) hospitalizations: IRR 0.97 Blacks (NS), 0.91 Whites (p < .001). There was no significant difference in impact across minority groups. No significant differences were found in high distress (29% Black, 25.1% White), ≥1 distress cause (61.6% Black, 57.8% White), or ≥ 1 assistance request (64.5% Black, 59.1% White). Blacks were more likely to have ≥1 distress cause in the Practical domain. CONCLUSION: The PCCP may benefit both Black and White older cancer survivors. Programs should consider the proportion of older survivors with high distress, and the specific needs of minorities.

Resource Use and Medicare Costs During Lay Navigation for Geriatric Patients With Cancer.

IMPORTANCE: Lay navigators in the Patient Care Connect Program support patients with cancer from diagnosis through survivorship to end of life. They empower patients to engage in their health care and navigate them through the increasingly complex health care system. Navigation programs can improve access to care, enhance coordination of care, and overcome barriers to timely, high-quality health care. However, few data exist regarding the financial implications of implementing a lay navigation program. OBJECTIVE: To examine the influence of lay navigation on health care spending and resource use among geriatric patients with cancer within The University of Alabama at Birmingham Health System Cancer Community Network. DESIGN, SETTING, AND PARTICIPANTS: This observational study from January 1, 2012, through December 31, 2015, used propensity score-matched regression analysis to compare quarterly changes in the mean total Medicare costs and resource use between navigated patients and nonnavigated, matched comparison patients. The setting was The University of Alabama at Birmingham Health System Cancer Community Network, which includes 2 academic and 10 community cancer centers across Alabama, Georgia, Florida, Mississippi, and Tennessee. Participants were Medicare beneficiaries with cancer who received care at participating institutions from 2012 through 2015. EXPOSURES: The primary exposure was contact with a patient navigator. Navigated patients were matched to nonnavigated patients on age, race, sex, cancer acuity (high vs low), comorbidity score, and preenrollment characteristics (costs, emergency department visits, hospitalizations, intensive care unit admissions, and chemotherapy in the preenrollment quarter). MAIN OUTCOMES AND MEASURES: Total costs to Medicare, components of cost, and resource use (emergency department visits, hospitalizations, and intensive care unit admissions). RESULTS: In total, 12 428 patients (mean (SD) age at cancer diagnosis, 75 (7) years; 52.0% female) were propensity score matched, including 6214 patients in the navigated group and 6214 patients in the matched nonnavigated comparison group. Compared with the matched comparison group, the mean total costs declined by $781.29 more per quarter per navigated patient (ß = -781.29, SE = 45.77, P < .001), for an estimated $19 million decline per year across the network. Inpatient and outpatient costs had the largest between-group quarterly declines, at $294 and $275, respectively, per patient. Emergency department visits, hospitalizations, and intensive care unit admissions decreased by 6.0%, 7.9%, and 10.6%, respectively, per quarter in navigated patients compared with matched comparison patients (P < .001). CONCLUSIONS AND RELEVANCE: Costs to Medicare and health care use from 2012 through 2015 declined significantly for navigated patients compared with matched comparison patients. Lay navigation programs should be expanded as health systems transition to value-based health care.

Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials.

PURPOSE: Less than 10% of patients enrolled in clinical trials are minorities. The patient navigation model has been used to improve access to medical care but has not been evaluated as a tool to increase the participation of minorities in clinical trials. The Increasing Minority Participation in Clinical Trials project used patient navigators (PNs) to enhance the recruitment of African Americans for and their retention in therapeutic cancer clinical trials in a National Cancer Institute-designated comprehensive cancer center. METHODS: Lay individuals were hired and trained to serve as PNs for clinical trials. African American patients potentially eligible for clinical trials were identified through chart review or referrals by clinic nurses, physicians, and social workers. PNs provided two levels of services: education about clinical trials and tailored support for patients who enrolled in clinical trials. RESULTS: Between 2007 and 2014, 424 African American patients with cancer were referred to the Increasing Minority Participation in Clinical Trials project. Of those eligible for a clinical trial (N = 378), 304 (80.4%) enrolled in a trial and 272 (72%) consented to receive patient navigation support. Of those receiving patient navigation support, 74.5% completed the trial, compared with 37.5% of those not receiving patient navigation support. The difference in retention rates between the two groups was statistically significant (P < .001). Participation of African Americans in therapeutic cancer clinical trials increased from 9% to 16%. CONCLUSION: Patient navigation for clinical trials successfully retained African Americans in therapeutic trials compared with non-patient navigation trial participation. The model holds promise as a strategy to reduce disparities in cancer clinical trial participation. Future studies should evaluate it with racial/ethnic minorities across cancer centers.

The Patient Care Connect Program: Transforming Health Care Through Lay Navigation.

The Patient Care Connect Program (PCCP) is a lay patient navigation program, implemented by the University of Alabama at Birmingham Health System Cancer Community Network. The PCCP's goal is to provide better health and health care, as well as to lower overall expenditures. The program focuses on enhancing the health of patients, with emphasis on patient empowerment and promoting proactive participation in health care. Navigator training emphasizes palliative care principles and includes development of skills to facilitate advance care planning conversations. Lay navigators are integrated into the health care team, with the support of a nurse supervisor, physician medical director, and administrative champion. The intervention focuses on patients with high needs to reach those with the greatest potential for benefit from supportive services. Navigator activities are guided by frequent distress assessments, which help to identify patient concerns across multiple domains, triage patients to appropriate resources, and ultimately overcome barriers to health care. In this article, we describe the PCCP's development, infrastructure, selection and training of lay navigators, and program operations.