Understanding disruptions in cancer care to reduce increased cancer burden.

Background: This study seeks to understand how and for whom COVID-19 disrupted cancer care to understand the potential for cancer health disparities across the cancer prevention and control continuum. Methods: In this cross-sectional study, participants age 30+residing in an 82-county region in Missouri and Illinois completed an online survey from June-August 2020. Descriptive statistics were calculated for all variables separately and by care disruption status. Logistic regression modeling was conducted to determine the correlates of care disruption. Results: Participants (N=680) reported 21% to 57% of cancer screening or treatment appointments were canceled/postponed from March 2020 through the end of 2020. Approximately 34% of residents stated they would need to know if their doctor's office is taking the appropriate COVID-related safety precautions to return to care. Higher education (OR = 1.26, 95% CI:1.11-1.43), identifying as female (OR = 1.60, 95% CI:1.12-2.30), experiencing more discrimination in healthcare settings (OR = 1.40, 95% CI:1.13-1.72), and having scheduled a telehealth appointment (OR = 1.51, 95% CI:1.07-2.15) were associated with higher odds of care disruption. Factors associated with care disruption were not consistent across races. Higher odds of care disruption for White residents were associated with higher education, female identity, older age, and having scheduled a telehealth appointment, while higher odds of care disruption for Black residents were associated only with higher education. Conclusions: This study provides an understanding of the factors associated with cancer care disruption and what patients need to return to care. Results may inform outreach and engagement strategies to reduce delayed cancer screenings and encourage returning to cancer care. Funding: This study was supported by the National Cancer Institute's Administrative Supplements for P30 Cancer Center Support Grants (P30CA091842-18S2 and P30CA091842-19S4). Kia L. Davis, Lisa Klesges, Sarah Humble, and Bettina Drake were supported by the National Cancer Institute's P50CA244431 and Kia L. Davis was also supported by the Breast Cancer Research Foundation. Callie Walsh-Bailey was supported by NIMHD T37 MD014218. The content does not necessarily represent the official view of these funding agencies and is solely the responsibility of the authors.

Adapting a Research and Community Capacity-Building Program to Address Rural Cancer Burden and Facilitate Partnership Development Between Rural Community Stakeholders and an Urban Comprehensive Cancer Center.

While rural-urban cancer disparities persist, the research building capacity between rural communities and high-quality cancer centers remains limited. Thus, we describe how a National Cancer Institute-designated cancer center partnered with rural community stakeholders to adapt a cancer prevention-focused research and community capacity-building workshop. The workshop's goal was to strengthen community-academic partnerships and facilitate the development of sustainable well-resourced rural cancer-focused research. Researchers from the Siteman Cancer Center partnered with community leaders from rural counties in southern Illinois. We adapted the workshop from an existing evidence-based program. We analyzed changes in knowledge and research capacity and relevance to their community work. From February to May 2019, community partners guided all elements of the workshop development. Workshop participants were mostly White race (93%), had a college degree or beyond (75%), reported living in a rural community (93%), and represented an academic, faith-based, or healthcare institution (78%). Participants' mean knowledge scores of the presented content increased significantly after each session, from 9.3 to 9.9 for session 1 (p = 0.05) and 6.8 to 9.7 (p < 0.001) for session two. Through the workshop, participant scores also increased in research capacity skills, confidence, and their understanding of conducting research in the community. The workshop, co-curated and led by rural community leaders and researchers from Siteman Cancer Center, successfully increased knowledge of and interest in building cancer research capacity. Lessons from our work can inform the implementation of similar programs that address rural cancer health through research and community capacity building between rural community partners and urban cancer centers.

Community partners' responses to items assessing stakeholder engagement: Cognitive response testing in measure development.

BACKGROUND: Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience. OBJECTIVE: The primary objective of this study was to evaluate how community members understood and responded to a measure of community engagement developed to be reliable, valid, easily administered, and broadly usable. METHOD: Cognitive response interviews were completed, during which participants described their reactions to items and how they processed them. Participants were asked to interpret item meaning, paraphrase items, and identify difficult or problematic terms and phrases, as well as provide any concerns with response options while responding to 16 of 32 survey items. RESULTS: The results of the cognitive response interviews of participants (N = 16) suggest concerns about plain language and literacy, clarity of question focus, and the lack of context clues to facilitate processing in response to items querying research experience. Minimal concerns were related to response options. Participants suggested changes in words and terms, as well as item structure. CONCLUSION: Qualitative research can improve the validity and accessibility of measures that assess stakeholder experience of community-engaged research. The findings suggest wording and sentence structure changes that improve ability to assess implementation of community engagement and its impact on research outcomes.