Leslie R. Carnahan

Equity in precision cancer health, defined here as equitable access to inclusive cancer risk assessment, cancer risk reduction/management, and risk-appropriate cancer healthcare from prevention through survivorship, is critical for addressing broader population cancer disparities. Specifically, we describe the impact of the Illinois Cancer Health Equity Research (I-CHER) Center on precision cancer health equity, including how the Center cumulatively served >10,000 residents from under-resourced communities; disseminated findings to >300 members of the local cancer health disparities workforce; and translated scientific solutions into sustained clinical practice and two state laws. The objective of this case report is to describe the I-CHER Center’s multisectoral structure; participatory administrative processes for research; early implementation challenges and tensions across sectors; and solutions that contributed to early center-wide successes. This case report offers one example of the administrative infrastructure needed for advancing scientific solutions in precision cancer health equity within a Minority Serving Institution (MSI) and its internal federally qualified health center (FQHC).

Ineffective dissemination of cancer research and information among the public contributes to cancer inequities. Dissemination rarely involves efforts to engage non-research audiences and end-users in developing effective messaging. Efforts to promote equity in clinical trial participation may benefit from marketing strategies traditionally applied in the business sector. Black Americans suffer the highest death rates from most cancers than any other race/ethnicity, yet only 5% of patients enrolled in cancer clinical trials are Black. Our team used a marketing strategy framework to create a culturally responsive public service announcement (PSA) video to increase awareness of clinical trials among Black audiences. We partnered with a marketing recruitment firm and a marketing agency to conduct six focus groups (n = 54) with social support networks of Black cancer survivors and Black community members. Maximum variation sampling was used to recruit a national sample of eligible participants that varied in age, education, geographic region, and gender. Focus groups were conducted over three phases that informed script development, script and storyline testing, and sought feedback on the PSA video post-production. We used the Marketing and Clinical Trials Reference Model to guide marketing strategies, data collection, video content development and production. We used rapid qualitative data analysis techniques to identify themes for each phase to guide PSA development. Partnered with a film production company, we produced a 2-min PSA video that uses professional actors and storytelling and marketing techniques to describe clinical trials, provide relevant statistics, address barriers to participation expressed by participants, and provide credible resources to seek further information. We also produced 30 s and 60 s versions of the PSA to accommodate different marketing media outlets. Participants felt the videos were engaging and relatable and that the messaging was clear. The videos ignited meaningful discussions about clinical trial participation and motivated participants to share the information learned. Using marketing communication strategies is a low-tech, pragmatic approach to effectively produce health information that is meaningful, can be tailored for specific audiences, and disseminated to broader audiences.

Community-engaged research (CEnR) is a potent tool for addressing health inequities and fostering equitable relationships among communities, researchers, and institutions. CEnR involves collaboration throughout the research process, demonstrating improvements in study recruitment and retention, intervention efficacy, program sustainability, capacity building among partners, and enhanced cultural relevance. Despite the increasing demand for CEnR, institutional policies, particularly human participation protection training (HPP), lag behind, creating institutional barriers to community partnerships. Here, we highlight challenges encountered in our ongoing study, Fostering Opportunities in Research through Messaging and Education (FOR ME), focused on promoting shared decision-making around clinical trial participation among Black women diagnosed with breast cancer. Grounded in CEnR methods, FOR ME has a partnership with a community-based organization (CBO) that addresses the needs of Black women with breast cancer. Our CBO partner attempted to obtain HPP training, which was administratively burdensome and time-consuming. As CEnR becomes more prevalent, academic and research institutions, along with researchers, are faced with a call to action to become more responsive to community partner needs. Accordingly, we present a guide to HPP training for community partners, addressing institutional barriers to community partner participation in research. This guide outlines multiple HPP training pathways for community partners, aiming to minimize institutional barriers and enhance their engagement in research with academic partners.

Preventing Chronic Disease (PCD) is a peer-reviewed electronic journal established by the National Center for Chronic Disease Prevention and Health Promotion. PCD provides an open exchange of information and knowledge among researchers, practitioners, policy makers, and others who strive to improve the health of the public through chronic disease prevention.

The purpose of this study was to first characterize the prevalence of recall, recognition, and knowledge of colon cancer screening tests and guidelines (collectively, “awareness”) among non-Hispanic black (NHB) and NH white (NHW) urban colon cancer patients. Second, we sought to examine whether awareness was associated with mode of cancer detection. Low awareness regarding colon cancer screening tests and guidelines may explain low screening rates and high prevalence of symptomatic detection. We examined recall, recognition, and knowledge of colorectal cancer (CRC) screening tests and guidelines and their associations with mode of cancer detection (symptomatic versus screen-detected) in 374 newly diagnosed NHB and NHW patients aged 45–79. Patients were asked to name or describe any test to screen for colon cancer (recall); next, they were given descriptions of stool testing and colonoscopy and asked if they recognized each test (recognition). Lastly, patients were asked if they knew the screening guidelines (knowledge). Overall, awareness of CRC screening guidelines was low; just 20% and 13% of patients knew colonoscopy and fecal test guidelines, respectively. Awareness of CRC screening tests and guidelines was especially low among NHB males, socioeconomically disadvantaged individuals, and those diagnosed at public healthcare facilities. Inability to name or recall a single test was associated with reduced screen-detected cancer compared with recall of at least one test (36% vs. 22%, p = 0.01). Low awareness of CRC screening tests is a risk factor for symptomatic detection of colon cancer.

Background: Early detection of colon cancer is essential to successful treatment and survival, yet most patients are diagnosed only after onset of symptoms. Previous studies suggest differences in colon cancer screening and presentation by gender and race, but reasons for this are not understood. The purpose of this study was to identify barriers and facilitators to early detection of colon cancer and to compare by gender and race. Materials and Methods: In the Colon Cancer Patterns of Care in Chicago study, non-Hispanic Black and White (NHB, NHW) patients aged 30–79 newly diagnosed with colon cancer between 2010 and 2014 ( n = 249) underwent in-depth semistructured interviews regarding the pathway to colon cancer diagnosis. Mixed qualitative and quantitative methods were used to analyze patient narratives and to compare response patterns by gender and race within prespecified domains: health care access factors, provider-related factors, patient-related factors, and diagnostic workup factors. Results: Women reported more barriers than facilitators to early detection than men (barrier: facilitator ratio of 0.60 vs. 0.48). Thematic differences were seen, with women reporting more barriers related to health care access, scheduling of follow-ups, symptom recognition, and inappropriate or inconclusive diagnostic tests. Fewer women than men reported facilitators related to provider factors such as ease of scheduling follow-ups and receiving referrals for screening or a specialist. NHBs and NHWs reported similar ratios of barriers to facilitators (0.55 vs. 0.53), but more NHBs than NHWs reported barriers related to health care access, scheduling follow-ups, and clinical delays, and fewer NHBs reported facilitators related to health care accessibility (existing relationship with provider, ease of scheduling follow-ups). Conclusions: In this diverse population of patients recently diagnosed with colon cancer, we identified substantive gender- and race-based differences in the types and burden of barriers and facilitators to early detection experienced in the path to diagnosis. These differences should be explored further as they may contribute to disparities in the diagnosis and prognosis of colon cancer.

Purpose We explored relationships between patient-provider communication quality (PPCQ) and three quality of life (QOL) domains among self-identified rural cancer survivors: social well-being, functional well-being, and physical well-being. We hypothesized that high PPCQ would be associated with greater social and functional well-being, but be less associated with physical well-being, due to different theoretical mechanisms. Methods All data were derived from the 2017–2018 Illinois Rural Cancer Assessment (IRCA). To measure PPCQ and QOL domains, we respectively used a dichotomous measure from the Medical Expenditure Panel Survey’s Experience Cancer care tool (high, low/medium) and continuous measures from the Functional Assessment of Cancer Therapy-General (FACT-G). Results Our sample of 139 participants was largely female, non-Hispanic White, married, and economically advantaged. After adjusting for demographic and clinical variables, patients who reported high PPCQ exhibited greater social well-being (Std. β = 0.20, 95% CI: 0.03, 0.35, p = 0.02) and functional well-being (Std. β = 0.20, 95% CI: 0.05, 0.35, p = 0.03) than patients with low/medium PPCQ. No association was observed between PPCQ and physical well-being (Std. β = 0.06, 95% CI: − 2.51, 0.21, p = 0.41). Sensitivity analyses found similar, albeit attenuated, patterns. Conclusion Our findings aligned with our hypotheses. Future researchers should explore potential mechanisms underlying these differential associations. Specifically, PPCQ may be associated with social and functional well-being through interpersonal mechanisms, but may not be as associated with physical well-being due to multiple contextual factor rural survivors disproportionately face (e.g., limited healthcare access, economic hardship) and stronger associations with clinical factors.

Purpose Rural women, compared to urban, experience worse survivorship outcomes, including poorer health-related quality of life (QOL). There is a need to characterize the role of multilevel social factors that contribute to QOL, including context, networks, and functioning. Our objectives were to (1) use latent class analysis to identify distinct classes of social context and social networks and (2) examine how multilevel social factors (context, networks, and functioning) are associated with health-related QOL. Methods We recruited self-identified rural survivors to the Illinois Rural Cancer Assessment (2017–2018), via community-based sampling methods, and participants completed the survey online, by phone, or on paper. We used latent class analysis to generate multidimensional variables for contextual and network factors. We next modeled each social factor sas a predictor in separate, bivariable linear regressions for the QOL outcomes, followed by multivariable, adjusted regressions. Results For our first objective, there were three classes each of county-level contexts (1, highly rural, socioeconomically disadvantaged, and mostly lacking in cancer-related services; 2, mostly rural, moderately disadvantaged, and underserved; 3, mostly metropolitan, less disadvantaged, and most-resourced) and social networks (1, no caregivers; 2, only spousal caregivers with whom they communicated daily; 3, multiple caregivers with varying daily communication). For our second objective, among all social factors, only functioning was associated with better mental health-related QOL. No factors were associated with physical health-related QOL. Conclusions Our findings suggest a rich diversity of social context and networks among rural female cancer survivors, and social functioning is particularly important for mental health-related QOL.

Social connectedness generally buffers the effects of stressors on quality of life. Is this the case for cancer-related debt among rural cancer survivors? Drawing on a sample of 135 rural cancer survivors, we leverage family/friend informal caregiver network data to determine if informal cancer caregivers buffer or exacerbate the effect of cancer-related debt on mental-health-related quality of life (MHQOL). Using data from the Illinois Rural Cancer Assessment, a survey of cancer survivors in rural Illinois, we estimate the association between cancer-related debt and MHQOL and whether informal caregiver network size and characteristics moderate this association. Over a quarter of survivors (27%) reported cancer-related debt, and those who did reported worse MHQOL. However, this association only held for survivors who had an informal caregiver network. These findings supplement what is already known about the role of social connectedness in cancer survivors’ health outcomes. We offer possible explanations for these findings.

Purpose: As disparities in rural‐urban cancer survivorship rates continue to widen, optimizing patient‐provider communication regarding timely follow‐up care is a potential mechanism to improving survivorship‐related outcomes. The current study examines sociodemographic and health predictors of posttreatment patient‐provider communication and follow‐up care and associations between written communication and timely follow‐up care for cancer survivors who identify as rural.Methods: Data were analyzed from posttreatment cancer survivor respondents of the Illinois Rural Cancer Assessment Study. The current study tested associations between sociodemographic variables and health factors on the quality of patient‐provider communication and timely posttreatment follow‐up care, defined as visits ≤ 3 months posttreatment, and associations between the receipt of written patient‐provider communication on timely posttreatment follow‐up care.Results: Among 90 self‐identified rural cancer survivors, respondents with annual incomes < $50,000 and ≤ High School diploma were more likely to report a high quality of posttreatment patient‐provider communication. Posttreatment written communication was reported by 62% of the respondents and 52% reported timely follow‐up visits during the first 3 years of posttreatment care. Patients who reported receiving written patient‐provider communication were more likely to have timely posttreatment follow‐up care after completing active treatment than patients who had not received written patient‐provider communication.Conclusions: Our findings suggest that written patient‐provider communication improved timely follow‐up care for self‐identified rural cancer survivors. This research supports policy and practice that recommend the receipt of written survivorship care plans. Implementation of written survivorship care recommendations has the potential to improve survivorship care for rural cancer survivors.