Engaging communities to inform the development of a diverse cohort of cancer survivors: formative research for the eat move sleep study (EMOVES).

BACKGROUND: There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992-3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208-1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented cancer survivors, to better understand modifiable risk factors that influence clinical and quality of life outcomes in these populations. Towards that goal, we describe herein how we applied community-based participatory research approaches to develop inclusive study materials for enrolling such a cohort. METHODS: We implemented community engagement strategies to inform and enhance the study website and recruitment materials for this cohort including: hiring a dedicated engagement coordinator/community health educator as a member of our team; working with the Helen Diller Family Comprehensive Cancer Center Office of Community Engagement (OCE) and Community Advisory Board members; presenting our educational, research, and study recruitment materials at community events; and establishing a community advisory group specifically for the study (4 individuals). In parallel with these efforts, 20 semi-structured user testing interviews were conducted with diverse cancer survivors to inform the look, feel, and usability of the study website. RESULTS: Engagement with community members was a powerful and important approach for this study's development. Feedback was solicited and used to inform decisions regarding the study name (eat move sleep, EMOVES), logo, study website content and imagery, and recruitment materials. Based on community feedback, we developed additional educational materials on healthy groceries and portion size in multiple languages and created a study video. CONCLUSIONS: Including an engagement coordinator as a permanent team member, partnering with the institutional community outreach and engagement resources (i.e., OCE), and allocating dedicated time and financial support for cultivating relationships with stakeholders outside the university were critical to the development of the study website and materials. Our community guided strategies will be tested as we conduct enrollment through community advisor networks and via the state cancer registry.

Under-represented racial and ethnic populations are diagnosed with and die from cancer at higher rates than white Americans but are less likely to be included in research studies. This has resulted in limited data on these populations, especially regarding cancer survivorship and lifestyle factors such as diet, exercise, and sleep. Our aim was to develop inclusive and appealing study materials for enrolling a diverse cancer survivorship cohort by integrating a community engagement coordinator/health educator into the research team and collaborating with our cancer center's office of community engagement community advisory board. An additional bridge was developed between community partners and the research team by establishing a community advisory board specifically for the study. We also conducted 20 user testing interviews with cancer survivors and community stakeholders to inform the look, feel, and usability of the study website during development. Our community partnerships and interviews assisted with decisions on our study name, Eat Move Sleep Study (EMOVES), logo, redesigning the study website, and study format. Our partners also provided guidance that highlighted community need and development of new educational materials for healthy diet (postcard sized grocery list on healthy eating) and a video-based recruitment tool for the study. Incorporation of an engagement coordinator into the research team, building an ongoing relationship with our cancer center's office of community engagement, and adding community advisors onto our study team has greatly impacted our study approach and design.

Engaging Men of Diverse Racial and Ethnic Groups With Advanced Prostate Cancer in the Design of an mHealth Diet and Exercise Intervention: Focus Group Study.

BACKGROUND: Healthy diet and exercise can improve quality of life and prognosis among men with prostate cancer. Understanding the perceived barriers to lifestyle change and patient preferences in a diverse cohort of men with prostate cancer is necessary to inform mobile health (mHealth) lifestyle interventions and increase health equity. OBJECTIVE: We conducted a multisite study to understand the preferences, attitudes, and health behaviors related to diet and lifestyle in this patient population. This report focuses on the qualitative findings from 4 web-based focus groups comprising a racially and ethnically diverse group of patients with advanced prostate cancer who are on androgen deprivation therapy. METHODS: We used grounded theory analyses including open, axial, and selective coding to generate codes. Qualitative data were analyzed as a whole rather than by focus group to optimize data saturation and the transferability of results. We present codes and themes that emerged for lifestyle intervention design and provide recommendations and considerations for future mHealth intervention studies. RESULTS: Overall, 14 men participated in 4 racially and ethnically concordant focus groups (African American or Black: 3/14, 21%; Asian American: 3/14, 21%; Hispanic or Latino: 3/14, 21%; and White: 5/14, 36%). Analyses converged on 7 interwoven categories: context (home environment, access, competing priorities, and lifestyle programs), motivation (accountability, discordance, feeling supported, fear, and temptation), preparedness (health literacy, technological literacy, technological preferences, trust, readiness to change, identity, adaptability, and clinical characteristics), data-driven design (education, psychosocial factors, and quality of life), program mechanics (communication, materials, customization, and being holistic), habits (eg, dietary habits), and intervention impressions. These results suggest actionable pathways to increase program intuitiveness. Recommendations for future mHealth intervention design and implementation include but are not limited to assessment at the individual, household, and neighborhood levels to support a tailored intervention; prioritization of information to disseminate based on individuals' major concerns and the delivery of information based on health and technological literacy and communication preferences; prescribing a personalized intervention based on individuals' baseline responses, home and neighborhood environment, and support network; and incorporating strategies to foster engagement (eg, responsive and relevant feedback systems) to aid participant decision-making and behavior change. CONCLUSIONS: Assessing a patient's social context, motivation, and preparedness is necessary when tailoring a program to each patient's needs in all racial and ethnic groups. Addressing the patients' contexts and motivation and preparedness related to diet and exercise including the household, access (to food and exercise), competing priorities, health and technological literacy, readiness to change, and clinical characteristics will help to customize the intervention to the participant. These data support a tailored approach leveraging the identified components and their interrelationships to ensure that mHealth lifestyle interventions will engage and be effective in racially and ethnically diverse patients with cancer. TRIAL REGISTRATION: ClinicalTrials.gov NCT05324098; https://clinicaltrials.gov/ct2/show/NCT05324098.

Neighborhood attributes and cardiovascular disease risk in breast cancer survivors: The Pathways Study.

BACKGROUND: Breast cancer survivors are at a higher risk of cardiovascular disease (CVD) morbidity and mortality compared with the general population. The impact of objective social and built neighborhood attributes on CVD risk in a cohort of female breast cancer survivors was examined. METHODS: The 3975 participants came from the Pathways Study, a prospective cohort of women with invasive breast cancer from an integrated health care system in northern California. Women diagnosed with breast cancer from 2006 through 2013 were enrolled on average approximately 2 months after diagnosis. Their baseline addresses were geocoded and appended to neighborhood attributes for racial/ethnic composition, socioeconomic status (SES), population density, urbanization, crime, traffic density, street connectivity, parks, recreational facilities, and retail food environment. Incident CVD events included ischemic heart disease, heart failure, cardiomyopathy, or stroke. Cox proportional hazards models estimated associations of neighborhood attributes with CVD risk, which accounted for clustering by block groups. Fully adjusted models included sociodemographic, clinical, and behavioral factors. RESULTS: During follow-up through December 31, 2018, 340 participants (8.6%) had CVD events. A neighborhood racial/ethnic composition measure, percent of Asian American/Pacific Islander residents (lowest quintile hazard ratio [HR], 1.85; 95% CI, 1.03-3.33), and crime index (highest quartile HR, 1.48; 95% CI, 1.08-2.03) were associated with the risk of CVD events independent of individual SES, hormone receptor status, treatment, cardiometabolic comorbidities, body mass index, and physical activity. CONCLUSIONS: With the application of a socio-ecological framework, how residential environments shape health outcomes in women with breast cancer and affect CVD risk in this growing population can be understood.

Impact of Racial/Ethnic Discrimination on Quality of Life Among Breast Cancer Survivors.

Although racial/ethnic disparities in health-care access, treatment, and cancer outcomes are well documented, the impact of racial/ethnic discrimination on cancer survivorship is unclear. We examined associations between quality of life (QoL) and self-reported discrimination among 3,991 women with breast cancer recruited during 2006-2013 from the Pathways Study in the Kaiser Permanente Northern California integrated health-care system, using linear regression models. Overall, 31% of women reported experiencing racial/ethnic discrimination, with differences by race/ethnicity (82% among non-Hispanic Black women vs. 19% among non-Hispanic White women) and nativity (40% among foreign-born Hispanic women vs. 76% among US-born Asian-American women). Experiencing racial/ethnic discrimination was associated with lower QoL in fully adjusted models. The mean QoL score was 119.6 (95% confidence interval (CI): 102.0, 137.1) for women who did not report discrimination, 115.5 (95% CI: 98.0, 133.0) for those who reported some discrimination/less than the median level, and 110.2 (95% CI: 92.7, 127.7) for those who reported more discrimination/greater than or equal to the median level. Discrimination was associated with lower QoL among women who used passive coping strategies or lived in neighborhoods with high neighborhood socioeconomic status, neighborhoods with high levels of segregation, or non-ethnic enclaves. Among breast cancer survivors, clinically meaningful differences in QoL scores were associated with racial/ethnic discrimination. Additional studies are needed to understand potential pathways through which these social factors affect survivorship outcomes.

Representativeness of breast cancer cases in an integrated health care delivery system.

BACKGROUND: Integrated health care delivery systems, with their comprehensive and integrated electronic medical records (EMR), are well-poised to conduct research that leverages the detailed clinical data within the EMRs. However, information regarding the representativeness of these clinical populations is limited, and thus the generalizability of research findings is uncertain. METHODS: Using data from the population-based California Cancer Registry, we compared age-adjusted distributions of patient and neighborhood characteristics for three groups of breast cancer patients: 1) those diagnosed within Kaiser Permanente Northern California (KPNC), 2) non-KPNC patients from NCI-designated cancer centers, and 3) those from all other hospitals. RESULTS: KPNC patients represented 32 % (N = 36,109); cancer center patients represented 7 % (N = 7805); and all other hospitals represented 61 % (N = 68,330) of the total breast cancer patients from this geographic area during 1996-2009. Compared with cases from all other hospitals, KPNC had slightly fewer non-Hispanic Whites (70.6 % versus 74.4 %) but more Blacks (8.1 % versus 5.0 %), slightly more patients in the 50-69 age range and fewer in the younger and older age groups, a slightly lower proportion of in situ but higher proportion of stage I disease (41.6 % versus 38.9 %), were slightly less likely to reside in the lowest (4.2 % versus 6.5 %) and highest (36.2 % versus 39.0 %) socioeconomic status neighborhoods, and more likely to live in suburban metropolitan areas and neighborhoods with more racial/ethnic minorities. Cancer center patients differed substantially from patients from KPNC and all other hospitals on all characteristics assessed. All differences were statistically significant (p < .001). CONCLUSIONS: Although much of clinical research discoveries are based in academic medical centers, patients from large, integrated medical centers are likely more representative of the underlying population, providing support for the generalizability of cancer research based on electronic data from these centers.