OBJECTIVES:To characterize patient and caregiver end-of-life (EOL) information needs through analysis of inquiries received by the National Cancer Institute's Cancer Information Service (CIS). SAMPLE & SETTING:The sample consisted of CIS inquiries received between September 2018 and June 2024 that were (a) initiated by patients or caregivers and (b) coded as focusing on the EOL phase of the cancer continuum. METHODS & VARIABLES:Descriptive and network analyses were conducted to characterize CIS inquiries and explore patterns of co-occurrence related to subjects of inquiry. RESULTS:Of the 81,836 inquiries received by the CIS during the study period, 3% (n = 2,333) focused on EOL; of these, 90% were initiated by caregivers. Patterns of subject-of-inquiry co-occurrence related to palliative care/hospice, finding healthcare services, cancer-directed therapies, coping, and clinical trials were observed. Patient and caregiver network structures were highly correlated (r = 0.799, p < 0.001), suggesting similar patterns of information needs. IMPLICATIONS FOR NURSING:Tailoring informational support and bundling common information needs are crucial strategies to optimally support patients with cancer and caregivers at the EOL. These findings highlight the need for nurse-led, novel care delivery models that can address unmet needs and improve the provision of support, such as caregiver-focused, community-based navigation; delivery of palliative care concurrent with cancer-directed therapies; and embedded caregiver clinics within cancer centers.

PURPOSE:Given well-documented rural-urban disparities in cancer outcomes, we conducted a portfolio analysis to characterize rural cancer control-focused grants funded by the National Cancer Institute (NCI) between fiscal years 2016 and 2024 and to identify opportunities for future research. METHODS:ISearch, an NIH portfolio analysis tool, was used to identify rural-focused cancer control research grants funded by NCI. 128 grants were analyzed for key attributes, including grant characteristics (e.g., funding mechanism), cancer site, cancer control continuum phase, research topic, methods, setting, and intervention delivery channel. SAS version 9.4 was used to calculate code frequencies. FINDINGS:On average, 14 new grants focused on rural cancer control were awarded per year. Colorectal (n = 36) and breast cancer (n = 27) were the most frequently studied cancer sites. Prevention (n = 43) and treatment (n = 41) were the most frequently addressed phases of the cancer control continuum. Common research topics included quality of care (n = 30), quality of life/mental health (n = 26), and screening (n = 25). Most grants utilized randomized control trials (n = 78) and qualitative research methods (n = 77). Projects were most frequently set in the home (n = 68) or in health care settings (n = 47). Interventions were most frequently delivered through interpersonal interaction, either in-person (n = 40), over the phone (n = 36), or through videoconferencing (n = 27). CONCLUSIONS:NCI has supported an array of rural cancer control studies since 2016. However, opportunities were identified to further address rural cancer disparities, including efforts focused on understudied topics (e.g., financial toxicity), cancer sites (e.g., cervical cancer), phases of the cancer control continuum (e.g., end-of-life), and settings (e.g., community-based organizations).

The National Cancer Institute's (NCI) Cancer Information Service (CIS) was founded in 1975 in accordance with a Congressional mandate requiring NCI to provide accurate, timely, and reliable cancer information to the American public as part of the National Cancer Act. For 50 years, the CIS has provided cancer patients, caregivers, healthcare professionals, and the public with high-quality information and resources on topics across the cancer control continuum, cancer clinical trials, and tobacco use cessation. Throughout its history, the CIS has adapted to changes in the health communication environment and evolving consumer needs, for example, by implementing additional access channels and launching a Spanish-language service to better serve the public. In addition to being a premier cancer information resource, the CIS is a unique laboratory for health communication research as data collected from the program is routinely used to monitor the public's emerging cancer information needs and to study information-seeking patterns across a variety of cancer control topics. This commentary aims to spotlight the role of the CIS as a federal health information resource that has been addressing the public's real-time cancer information needs and responding to national cancer research and public health priorities for over 5 decades.

Spanish is the second most commonly spoken language in the United States (US). The majority of Spanish speakers in the US identify as Hispanic/Latino individuals, a population for whom cancer is the leading cause of death. This descriptive study examined cancer information-seeking patterns among Spanish-speaking users of the National Cancer Institute’s Cancer Information Service (CIS), a free and publicly available cancer information resource. Between January 2019 and December 2025, the CIS received 19,280 Spanish-language inquiries from caregivers (33.4

Background:It is important to understand how health behaviors, and beliefs about health behaviors and cancer risk, vary by sociodemographic factors. Methods:The Health Information National Trends Survey - Surveillance, Epidemiology, and End Results study sampled US cancer survivors in 2021. We used weighted logistic regression to examine associations between sociodemographic factors, health behavior guideline adherence, and beliefs about health behaviors and cancer risk. Results:Among 1134 cancer survivors, only 4% were current smokers, but 48% consumed alcohol and only 43% met aerobic exercise guidelines and 31% met strength training guidelines. Alcohol use was more common among males [vs. females, odds ratio (OR): 1.55; 95% confidence interval (CI): 1.12, 2.14], employed cancer survivors (vs. retired OR: 1.74; 95% CI: 1.07, 2.84), and those with higher incomes (<$50,000 vs. $100,000+ (ref.) OR: 0.58; 95% CI: 0.36, 0.94). Cancer survivors less likely to meet aerobic exercise guidelines included those who were not retired or employed (e.g. disabled; vs. retired OR: 0.49; 95% CI: 0.28, 0.86), with incomes <$50,000 (vs. $100,000+ OR: 95% CI: 0.50; 95% CI: 0.32, 0.78), and residing in non-metropolitan areas (vs. metropolitan with 1 + million residents, OR: 0.56; 95% CI: 0.38, 0.81). Females and retired cancer survivors were less likely to meet strength training guidelines (males vs. females (ref.) OR: 1.62; 95% CI: 1.23, 2.12; employed vs. retired (ref.) OR: 1.67; 95% CI: 1.04, 2.66). Lower education was strongly associated with beliefs that cancer risk is outside individual control (OR's: 1.73-3.85). Beliefs about health behaviors and cancer risk were not associated with health behavior guideline adherence. Conclusions:Smoking was uncommon in this sample of cancer survivors, but many reported alcohol use and did not meet exercise guidelines. Patterns of sociodemographic factors differed by behavior. Alcohol use was more common among males and those with higher incomes. Cancer survivors with lower incomes and residing in non-metropolitan areas had the highest need for physical activity interventions.

Health communication can both reinforce and reduce adverse differences in cancer outcomes between groups. However, characteristics of cancer communication research aiming to reduce these health disparities have not been systematically assessed. Awarded research project grants in the National Cancer Institute's Health Communication and Informatics Research Branch (NCI-HCIRB) portfolio (2010-2024; n = 159) were coded to identify disparities focus and population(s) of interest. Disparities-focused grants were subsequently coded for cancer topic areas (e.g. cancer type) and research approach (i.e. methods, measures, analysis plan). Out of 159 grants, 64 (40%) had a health disparities focus. Of these, 78% developed or tested an intervention and 86% included a sample entirely comprised of populations known to experience health disparities. The most common populations of interest were racial or ethnic minority groups (55%), populations with lower socioeconomic status (20%), and rural residents (19%). Disparities-focused grants spanned varying cancer topics, including cancer prevention (53%) and breast cancer (27%). Nearly three-quarters of grants used both qualitative and quantitative research methods, and over one-third included community or participant engagement strategies. Drivers of health disparities were rarely measured beyond the individual level. Research may further prioritize engagement with affected communities and efforts to understand and address interpersonal and environmental factors influencing adverse differences in cancer outcomes.

We aimed to identify factors associated with genetic testing awareness and use among a large sample of US cancer survivors participating in NCI’s Health Information National Trends Survey of cancer survivors identified through the Surveillance, Epidemiology, and End Results program, a unique pilot study expanding the number of cancer survivors typically captured by HINTS. We analyzed 2021 HINTS-SEER data to determine sociodemographic factors associated with awareness and utilization of germline genetic testing using survey-weight-adjusted multivariable logistic regression. Of 1232 survivors (any site), the majority had breast (23

The National Cancer Institute's (NCI's) Health Information National Trends Survey® (HINTS®) was conceived in 1997 during a multidisciplinary conference focused on risk communication that included attendees representing the fields of psychology, health behavior, health education, public health, clinical medicine, and health journalism. The key recommendation from the conference was for NCI to develop a premiere communication-specific population survey to track health and cancer communication-related phenomena. This led to NCI developing and launching HINTS in 2003. HINTS is a cross-sectional, nationally representative survey of the US noninstitutionalized adult population (18 years and older) that collects data on the public's need for, access to, and use of health- and cancer-related information and health- and cancer-related knowledge, attitudes, and behaviors. As of 2024, HINTS had been administered 17 times over a 21-year period. The resulting datasets can be used for secondary analysis to examine a range of social and behavioral research questions in cancer control and population sciences. The datasets can be examined individually or merged to test for trends over time or to create larger samples for analysis. The evolution of the program has included testing and changing instrument administration modes, oversampling specific populations, and assessing priority constructs, as well as conducting methodological experiments to keep pace with emerging trends in survey research. HINTS has also expanded beyond its cross-sectional format to include data linkages and a longitudinal panel, enabling researchers to address a wider range of research questions. HINTS methods, data products, and impact are discussed.

People with HIV (PWH) are at higher risk of cancer compared to the general population and experience worse cancer outcomes compared to cancer patients without HIV. One contributing factor to these outcomes is stigma, a social phenomenon that manifests across both HIV and cancer and compounds among those with a dual diagnosis. To assess the state of research, we conducted a portfolio analysis of National Cancer Institute (NCI)-funded extramural grants on this topic. A keyword search identified 47 potentially relevant awards funded between Fiscal Years 2014-2024. Sixteen awards (8 research awards; 8 grant supplements) met inclusion criteria and were further double-coded for key study characteristics. Funded awards most frequently considered the prevention (n = 6) and treatment (n = 8) phases of the cancer control continuum, with few focusing on other phases of the continuum. Study samples were racially heterogeneous and often socioeconomically challenged, but no grants focused on other high-risk populations such as individuals with disabilities. Stigma was most often assessed as a predictor (n = 10) and measured at the individual level (n = 16). Seven awards assessed both HIV and cancer stigma, but these constructs were usually assessed independently. Only three grants included an intervention component addressing stigma. NCI-supported research on stigma in the context of HIV and cancer has been limited over the past decade. Results point to opportunities for enhancing extramural research in this area, including developing and testing stigma reduction interventions, expanding research across the cancer control continuum, and focusing on all affected populations.

Supplementary Figure from A National Map of NCI-Designated Cancer Center Catchment Areas on the 50th Anniversary of the Cancer Centers Program

PURPOSE:To evaluate pandemic-related changes in cancer-related care for cancer survivors residing in nonmetropolitan and metropolitan areas. METHODS:We used data from the Health Information National Trends-Surveillance Epidemiology End Results (HINTS-SEER) survey administered to cancer survivors from the Greater San Francisco Bay Area, Iowa, and New Mexico between January and August 2021. Respondents were queried on changes to their cancer-related care, including treatment, follow-up appointments, and routine cancer screening/preventive care. We calculated weighted percentages and Rao-Scott chi-square tests for reported differences between nonmetropolitan and metropolitan areas. FINDINGS:Compared to survivors residing in metropolitan areas, a higher proportion of those in nonmetropolitan areas reported that their cancer treatment or follow-up appointments were unaffected by the pandemic (38.6% vs 28.1%; P = .008). Survivors in metropolitan areas experienced more of a shift in cancer treatment or follow-up appointments to telehealth (12.5% vs 5.7%, P = .003), but there was no difference in appointment cancellations. More survivors residing in metropolitan versus nonmetropolitan areas reported shifts to telehealth for preventive care (8.2% vs 2.9%, P = .005). There was no difference across nonmetropolitan and metropolitan survivors reporting that cancer-related care was cancelled, that routine cancer screening or preventive care was unaffected by the pandemic, or that providers discussed COVID-19 risks. CONCLUSIONS:Survivors in nonmetropolitan compared to metropolitan areas had less perceived change in cancer follow-up and treatment schedules. It will be important to assess whether shifts in follow-up and preventive care to telehealth for cancer survivors in need of care during the COVID-19 pandemic affect their long-term outcomes.

Although cost discussions between cancer patients and their oncology providers are associated with lower out-of-pocket costs, patient experiences and preferences surrounding these conversations are relatively unexplored. This qualitative study, conducted March–April 2022, assessed patient-provider cost communication in a convenience sample of cancer survivors aged 26–60 and less than 5 years from diagnosis. Semi-structured interviews were recorded, transcribed, and coded using iterative content analysis to identify emerging patterns and themes. Survivors (N = 20) were 65

Stigma is a social process characterized by negative beliefs, attitudes, and stereotypes associated with a specific attribute or characteristic that leads to discrimination and social exclusion. Stigma manifests across the cancer control continuum and remains a key challenge for cancer prevention and control worldwide. In this commentary, we provide an overview of the U.S. National Cancer Institute’s (NCI) Global Cancer Stigma Research Workshop, a multi-disciplinary international conference held virtually in September 2022, which focused on the intersection of cancer and stigma. The meeting was unique in its convening of researchers, advocates, clinicians, and non-governmental and governmental organizations, who—as a collective—provided overarching topics, cross-cutting considerations, and future directions for the cancer stigma research community to consider, which we describe herein. In summary, studying cancer stigma comprehensively requires a holistic, adaptive, and multifaceted approach—and should consider interrelated factors and their intersection within diverse cultural and social contexts worldwide. Collectively, there was a call for: an inclusive approach, encouraging researchers and practitioners to identify and measure cancer stigma as a driver for cancer health inequities globally; an expansion of existing research methodology to include diversity of experiences, contexts, and perspectives; and collaborations among diverse stakeholders to develop more effective strategies for reducing stigma and improving cancer outcomes. Such efforts are essential to cultivating effective and equitable approaches to preventing and treating cancer worldwide.

Objectives Clinical trial knowledge and discussions about clinical trials with healthcare providers contribute to clinical trial participation and clinical trial representation. This study explored 1) the association of patient-provider communication with clinical trial knowledge, 2) how patient-provider communication impacts the associations of demographic and clinical factors with clinical trial knowledge, and 3) motivations for clinical trial participation among people with a history of cancer. Methods Cross-sectional data from the 2021 Health Information National Trends Survey- Surveillance, Epidemiology, and End Results (HINTS-SEER) study included 1,201 adult cancer survivors recruited from three SEER registries. Multivariable logistic regression models estimated adjusted associations of sociodemographic and clinical characteristics with clinical trial knowledge (none, a little bit/a lot) with and without the inclusion of clinical trial discussion with a healthcare provider (yes, no). Results Approximately three-quarters of cancer survivors reported having at least “a little” knowledge about clinical trials, though only 15% reported having discussed clinical trials with their provider. Those who reported patient-provider communication about clinical trials had 8.71 times higher odds of having some clinical trial knowledge. In multivariable logistic regression, odds of knowing at least a little bit about clinical trials were lower among adults without a college degree and among Hispanic and Non-Hispanic Asian (versus Non-Hispanic White) adults. Associations of demographic factors with clinical trial knowledge were not impacted by the inclusion of patient-provider discussion in the model. Top motivations for clinical trial participation were helping other people, new treatment, and getting better.Conclusion/Practice ImplicationsThere is a need to ensure information about clinical trials is provided to all people with cancer and to facilitate high quality communication between patients and providers about clinical trials.

Awareness of risk for oropharyngeal cancer from oral human papillomavirus (HPV) infection is low among men in the United States. This pilot study tested messages communicating oral HPV and oropharyngeal cancer risk among a sample of U.S. young adult men (aged 18–26). Six oral HPV and cancer risk messages were tested in an online survey. Participants ( N = 68) were randomly assigned to one of two message sets, each containing three unique text-based messages. Participants evaluated messages separately based on various measures (e.g., perceived message effectiveness [PME], novelty). One-way repeated measures ANOVAs were used to assess evaluation differences within message sets. Participants provided open-ended feedback about each message, which were synthesized into overarching themes. Participants were receptive to the risk messages, rating them high on PME (mean range = 3.72–4.25 out of 5) and other measures. Analyses identified three high-performing messages. For example, participants rated a message about HPV-linked oropharyngeal cancer risk rates in men versus women higher on attention and novelty than two other messages in the same set (both ps < .05). Participants were shown three messages (instead of all six) in each message set to minimize survey fatigue. Common themes from open-ended feedback were that participants liked the short-form structure of the messages and that the messages used gender-tailored language. In conclusion, oral HPV and oropharyngeal cancer risk messages may be useful for increasing risk awareness among men in the U.S. Further work should test such messages in rigorous experimental contexts to assess their efficacy in modifying other health outcomes, such as HPV vaccination behaviors.

Abstract Background: Germline genetic testing is a valuable tool for cancer treatment and family cancer risk assessment, but its uptake among cancer survivors remains low. Understanding the factors that influence awareness and use of genetic testing among survivors is crucial for improving access to this important tool. Methods: We analyzed HINTS-SEER data, a pilot project conducted by the National Cancer Institute (NCI) in 2021, that oversampled cancer survivors diagnosed prior to 2018 using three registries from the Surveillance, Epidemiology, and End Results (SEER) Program (Iowa, New Mexico, Greater Bay Area). We examined sociodemographic factors in relation to awareness and use of genetic testing using survey-weighted multivariable logistic regression models. We also examined associations among breast and prostate cancer survivors, separately, as these cancer types have guidelines for genetic testing and had sufficient observations (>100) for stratified analyses. Results: Of 1232 survivors included in the analysis, 277 (23%) had a history of breast cancer, 285 (23%) had prostate cancer, 82 (6.7%) had colorectal cancer, 25 (2%) had ovarian cancer, and 563 (45.7%) had other cancers. Overall, 76.5% of survivors were aware of genetic testing and 23.5% had used it. Among breast and prostate cancer survivors: 40.0% of breast and 20.6% of prostate cancer survivors were aware of genetic testing, and 21.0% and 2.4% had used it, respectively. In multivariable models, female gender (vs. male; OR=3.1, 95% CI: 2.3, 4.2), higher education (high school or less education vs. greater than high school; OR=2.4, 95% CI: 1.4, 3.9), higher income ($100,000 or more vs. Female gender (vs. male; OR=5.3, 95% CI: 3.3,8.5) was significantly associated with higher odds of use of genetic testing. Older age (>65 years vs. <40 years; OR=0.4, 95% CI: 0.2,0.7) and unemployed status (OR=0.4, 95% CI: 0.3-0.6) were significantly associated with lower odds of use of genetic testing. In stratified analyses, only older age among breast cancer survivors (≥65 vs. <40 years; OR=0.2, 95% CI: 0.0,0.9) was associated with lower odds of use of genetic testing. Conclusion: Our study provides valuable insights into genetic testing awareness and utilization among a large sample of cancer survivors in the United States. The identified factors associated with awareness and utilization can be used by healthcare providers to target interventions aimed at improving genetic testing awareness and utilization among cancer survivors. Citation Format: Kirithiga Ramalingam, Aaron Scheffler, Erin Van Blarigan, Stephen Li, Robin C. Vanderpool, Sarah H. Nash, Salma Shariff-Marco, Scarlett Gomez, Mindy Hebert-DeRouen. Awareness and use of genetic testing among cancer survivors in the United States: A HINTS-SEER study [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 768.

OBJECTIVE:To better understand cancer clinical trials (CCT) information-seeking, a necessary precursor to patient and provider engagement with CCT. METHODS:Data from the National Cancer Institute's Cancer Information Service (CIS) were used to examine CCT information-seeking patterns over a 5-year period. Descriptive and logistic regression analyses were conducted to examine characteristics of CIS inquiries and their associations with having a CCT discussion. RESULTS:Between September 2018 - August 2023, 117,016 CIS inquiries originated from cancer survivors, caregivers, health professionals, and the general public; 27.5 % of these inquiries included a CCT discussion (n = 32,160). Among CCT discussions, 35.5 % originated from survivors, 53.5 % from caregivers, 6.1 % from the public, and 4.9 % from health professionals. Inquiries in Spanish had lower odds of a CCT discussion (OR=.26, [.25-.28]), whereas inquiries emanating from the CIS instant messaging (OR=2.29, [2.22-2.37]) and email (OR=1.24, [1.18-1.30]) platforms were associated with higher odds of discussing CCT compared to the telephone. Individuals who were male, younger, insured, and had higher income and education had significantly higher odds of a CCT discussion while those who were non-Hispanic Black and living in rural locales had significantly lower odds. CONCLUSIONS:Disparities in CCT information-seeking may contribute to downstream CCT participation. PRACTICE IMPLICATIONS:Quality, language-concordant health information is needed to enable equitable awareness of - and ultimately engagement in - CCT.

Objective: Understanding the sources of telehealth disparities can inform efforts to ensure equity. This study examines disparities in telehealth offer and use to understand the role of health care providers in increasing telehealth access. Methods: This cross-sectional analysis of the 2022 Health Information National Trends Survey (n = 5,295) used survey-weighted proportions to characterize telehealth use and multivariable logistic regressions to test associations of sociodemographic and social determinants with (1) telehealth offer and (2) use among those offered the option. Results: Among U.S. adults, 57% were offered telehealth, 80% of whom used it. Technology difficulties and privacy concerns were barriers for 15%-20% of U.S. adults. Compared to telehealth users, most nonusers preferred in-person care (25% versus 84%). Age, education, geographic location, and broadband internet access were related to telehealth offer, whereas no significant disparities emerged in telehealth use. Conclusions: Telehealth use is widespread, but structural and provider-level engagement are needed to achieve equity.

Engagement of community members in biomedical research and public health initiatives is recognized as a critical component of translating science to practice, ensuring alignment with community needs and values as well as greater impact on positive health outcomes [1,2].Community outreach and engagement (COE) has been a fundamental activity of National Cancer Institute (NCI) Cancer Centers since the initiation of the Cancer Centers Program in 1971 [3].As stated in current P30 Cancer Centers Support Grant (CCSG) guidelines [3], COE is now expected to span all aspects of Centers' programs, including basic, clinical, translational, and population research.Centers-working with vested community members-are asked to identify community needs, communicate those needs across the Center's leadership and research programs (i.e., "in-reach"), support clinical trials accrual, and catalyze activities of special relevance to the Center's self-defined geographic catchment area population [3][4][5].Cancer Centers are encouraged to generate research projects where outreach to and engagement of communities informed and resulted in high impact science.Centers are also expected to work with communities to disseminate and implement evidence-based interventions (EBIs) and guidelines, cancer education, and public health policy recommendations.