Institute's Cancer Information Service Research Articles

Understanding Cannabis-Related Information Needs: An Analysis of Inquiries to the National Cancer Institute's Cancer Information Service.

Purpose: Given increased cannabis use for medical and nonmedical purposes alike, there is growing public interest related to the potential risks and benefits of cannabis use, particularly related to cancer. The purpose of this descriptive study was to analyze cannabis inquiries to the National Cancer Institute's Cancer Information Service (CIS). Materials and Methods: From September 2018 to June 2023, 190,070 noncannabis and 425 cannabis inquiries were documented by the CIS. Cannabis inquiries were delineated into two categories: nonmedical cannabis (NMC, n=240) or medical cannabis (MC, n=185). Chi-square tests were performed to determine differences between noncannabis and cannabis inquiries and descriptive analyses were used to identify patterns within cannabis-specific inquiries. Results: Statistically significant differences between noncannabis and cannabis inquiries were observed. In addition, there were variations in MC and NMC inquiries. For example, 73% of MC inquiries originated from cancer survivors and caregivers, whereas almost half of NMC inquiries (48%) were from individuals identifying as tobacco users. MC and NMC inquiries also differed by CIS access channel (e.g., instant chat, telephone), language used (English vs. Spanish), discussions of cancer continuum phases and cancer sites, and referrals provided to individuals for additional information and resources. Conclusion: Cannabis-related information needs of the public-as documented by the CIS-varied by several factors. Health information sources such as the CIS can help address cannabis-related questions and concerns, while noting differences in who is inquiring, how, and why.

Childhood Cancer Information-Seeking: Findings from the National Cancer Institute's Cancer Information Service.

The benefits of cancer information-seeking may be particularly salient to individuals impacted by childhood cancer, including patients, caregivers, health professionals, and advocates. The purpose of this study was to explore information-seeking patterns for childhood cancer through the National Cancer Institute's Cancer Information Service (CIS), a multi-channel, bilingual resource for cancer information. The study team conducted descriptive analyses on secondary data characterizing 1820 caregivers, health professionals, organizations, and members of the general public who contacted the CIS about childhood cancer between September 2018 and June 2022. Almost 80% of inquiries about childhood cancer were initiated by caregivers, followed by the public, health professionals, and organizations. Although English was the primary language used by individuals to reach the CIS when discussing childhood cancer, there were variations in points of access (i.e., telephone, instant messaging, email, social media) across the four user groups. Most childhood cancer inquiries were about staging and treatment, and the primary cancer sites discussed by CIS users were neurologic or brain, hematologic, and musculoskeletal cancers. Discussion topics included managing and coping with cancer, clinical trials, and treatment side effects. Just over half (54%) of CIS contacts about childhood cancer resulted in a health professional referral. Findings provide direction for the CIS and other public health organizations to deliver, prioritize, and tailor their services to support the information needs of childhood cancer survivors and their families-as well as those who care and advocate for them-who may have a significant need for credible cancer information.

Abstract PO-017: The association of COVID-19 and cancer screening inquiries among Spanish speakers: An examination of NCI Cancer Information Service data

Abstract The disruption of routine cancer screening during the COVID-19 pandemic is a public health priority given documented delays in the diagnosis and treatment of screening-eligible cancers, and future impacts on cancer mortality. Furthermore, COVID-19 has disproportionately affected historically underrepresented populations such as the Hispanic community, who already experience lower cancer screening rates compared to non-Hispanic whites. The purpose of this study was to examine inquiries about cancer screening among Spanish-speaking general public users before and during COVID-19, using data from the National Cancer Institute's Cancer Information Service (CIS). For this analysis, we examined cancer screening inquiries before (February 2019-March 2020) and during (March 2020-January 2021) COVID-19 among Spanish-speaking general public users. We analyzed CIS point of access (email, LiveHelp, social media, telephone), subjects of interaction, and referrals. Cancer sites with low cell sizes (e.g., lung) were combined into the category “other.” We conducted Chi-squared tests to compare counts for cancer screening inquiries before and during COVID-19 across these variables. There were 47.3% (n=691) cancer screening inquiries among English-speaking users before COVID-19 and 52.7% (n=770) during COVID-19. In comparison, among the 300 cancer screening inquiries from Spanish speakers, there were 57% (n=171) before COVID-19 compared to 43% (n=129) during COVID-19. There was a significant difference in patterns between these two groups (p<.002). Cancer site inquiries among Spanish speakers included breast (n=66), general (n=108), and 17 other cancers combined (n=126). The proportion of breast and general cancer inquiries from Spanish speakers increased during COVID-19 compared to pre-COVID (p<.001), whereas other cancer inquiries decreased. Additionally, Spanish-speaking telephone-based inquiries increased during COVID-19 whereas all other points of access decreased (p<.001); subjects of interaction regarding general cancer questions increased, but those on finding healthcare services, screening tests, and other subjects decreased (p<.01); and there was an increase in referrals to national/community organizations and to the CDC National Breast and Cervical Cancer Early Detection Program, although referrals to healthcare providers and other sources decreased during COVID-19 (p<.001). We found that COVID-19 was associated with a significant decrease in cancer screening inquiries among Spanish speakers compared to English speakers using the CIS, with changes in point of access, referrals, subject of interaction, and cancer site for Spanish-speaking CIS users. It is critical to evaluate how these changes in information-seeking may affect screening behaviors post-COVID in Hispanic communities and may potentially widen existing disparities that have worsened during COVID-19. Despite overall inquiry reductions, there was an increase in some cancer screening referrals, hopefully resulting in increased screening behavior among Spanish-speaking CIS users. Citation Format: Heather N. Platter, Adaora Ezeani, Travis Hyams, Grace C. Huang, Robin C. Vanderpool, William M.P. Klein. The association of COVID-19 and cancer screening inquiries among Spanish speakers: An examination of NCI Cancer Information Service data [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-017.

Examining the impact of a multimedia intervention on treatment decision-making among newly diagnosed prostate cancer patients: results from a nationwide RCT.

Men diagnosed with early stage prostate cancer face multiple treatment options, each with distinctive side effects that have significant implications for post-treatment quality of life. Healing Choices for Men with Prostate Cancer is a multimedia educational and decision aid program. This nation-wide randomized controlled trial evaluated the impact of Healing Choices on reducing decisional conflict and distress. Eligible prostate cancer patients who called the National Cancer Institute's Cancer Information Service (CIS) were invited to participate. After a baseline interview, participants were randomized to usual personalized consultation with a CIS specialist (comparison condition) or CIS personalized consultation plus the Healing Choices program (intervention condition). The Decision Conflict Scale and Impact of Event Scale assessed decisional conflict about prostate cancer treatment and cancer-related distress, respectively. Analyses evaluated group differences at 2 months postenrollment. Hypothesized moderation of intervention effects by demographic and clinical characteristics were evaluated. The final sample consisted of N = 349 participants (intervention: n = 181; comparison n = 168). Men were on average 64 years old, primarily White, and well educated. The difference in total decisional conflict was not significant (DCS total score; F[1,311] = .99, p = .32). The difference in cancer-related distress at 2 months between the intervention and the comparison groups was not significant (F[1,337] = .01, p = .93). Evaluation of specific decision processes indicated a significant effect on levels of perceived decisional support (intervention, M = 34.8, SD = 15.7; comparison, M = 38.3, SD = 16.1; F[1,337] = 3.74, p = .05). The intervention effect was greatest for nonwhite minority participants (b = -9.65, SE = 4.67) and those with lower educational attainment (b = 3.87, SE = 2.21). This interactive, comprehensive education and decision aid program may be most effective for a subset of prostate cancer patients in need of educational and decisional support.

Bridging the critical chasm between service and research: the Cancer Information Service's collaboratory.

As a collaboratory for cancer communication and education research, the National Cancer Institute's (NCIs) Cancer Information Service (CIS) is in an ideal position to bridge the critical chasm that exists between service and research. This article describes the CIS' current research program as well as the CIS Research Agenda launched in 2005. The CIS' progress in developing and supporting recently funded studies that address this agenda is detailed. The unique resources and opportunities available to researchers, public health practitioners, health care providers, and community-based organizations interested in developing collaborative cancer communication and cancer education studies with the CIS are identified and described and an invitation to collaborate is extended.

HPV Knowledge and Vaccine Acceptability Among Hispanic Fathers

The purpose of this study was to examine human papillomavirus (HPV) knowledge and vaccine acceptability in a convenience sample of immigrant Hispanic men, many of whom are parents of adolescents. Data on 189 male callers were collected from the National Cancer Institute's Cancer Information Service Spanish-language call center. Most participants were willing to vaccinate their adolescent son (87.5%) or daughter (78.8%) against HPV. However, among this sample, awareness of HPV was low and knowledge of key risk factors varied. These findings can help guide the development of culturally informed educational efforts aimed at increasing informed decision-making about HPV vaccination among Hispanic fathers.

Testing Messages to Encourage Discussion of Clinical Trials Among Cancer Survivors and Their Physicians: Examining Monitoring Style and Message Detail

Encouraging cancer survivors to discuss clinical trials with their physicians may increase enrollment in clinical trials. Health messages offer one method for encouraging such discussions. We hypothesized that matching messages to an individual's preference for detailed or non-detailed information (i.e., monitoring style) would result in more discussions. Participants (N = 538) were cancer survivors, who phoned the National Cancer Institute's Cancer Information Service (CIS). Participants were classified as higher or lower monitors and then randomized to receive detailed or non-detailed messages in the mail 1 and 4 weeks following their baseline CIS call. At 12 weeks, there was a significant interaction between monitoring style and message detail. Follow-up analyses were nonsignificant but suggested a theoretically consistent pattern in which non-detailed messages were more effective among lower monitors. These findings imply that providing extremely detailed information may be excessive, even to individuals engaged in information seeking behavior.

Discussions of Cancer Clinical Trials with the National Cancer Institute's Cancer Information Service

Clinical trials are essential for the development of new and effective treatments for cancer; however, participation rates are low. One reason for this is lack of knowledge about clinical trials. This study assessed how often clinical trials are discussed on calls to National Cancer Institute's Cancer Information Service (CIS). The authors quantitatively analyzed 283,094 calls to the CIS (1-800-4-CANCER) over 3 years (2006–2008). They calculated descriptive statistics and multivariate regressions to determine whether specific caller characteristics are associated with the presence of a clinical trials discussion. In addition, 2 focus groups were conducted with CIS information specialists (n = 12) to provide insight into the findings. The authors found that approximately 9.3% of CIS calls discussed clinical trials, with higher percentages for patients (12.5%) and family members (15.4%). Calls with Hispanics, Blacks, and Spanish speakers were less likely to include a conversation. For all cancers, patients who are in treatment or experiencing a recurrence were statistically significantly more likely to discuss clinical trials. CIS information specialists reported callers’ limited knowledge of clinical trials. The CIS has the unique ability to make a substantial effect in educating patients about clinical trials as an option in cancer treatment and care.

Knowledge of HPV Among United States Hispanic Women: Opportunities and Challenges for Cancer Prevention

In the United States, Hispanic women contribute disproportionately to cervical cancer incidence and mortality. This disparity, which primarily reflects lack of access to, and underutilization of, routine Pap smear screening may improve with increased availability of vaccines to prevent Human Papillomavirus (HPV) infection, the principal cause of cervical cancer. However, limited research has explored known determinants of HPV vaccine acceptability among Hispanic women. The current study examines two such determinants, HPV awareness and knowledge, using data from the 2007 Health Interview National Trends Survey (HINTS) and a cross-section of callers to the National Cancer Institute's (NCI) Cancer Information Service (CIS). Study data indicate that HPV awareness was high in both samples (69.5% and 63.8% had heard of the virus) but that knowledge of the virus and its association with cervical cancer varied between the two groups of women. The CIS sample, which was more impoverished and less acculturated than their HINTS counterparts, were less able to correctly identify that HPV causes cervical cancer (67.1% vs. 78.7%) and that it is a prevalent sexually transmitted infection (STI; 66.8% vs. 70.4%). Such findings imply that future research may benefit from disaggregating data collected with Hispanics to reflect important heterogeneity in this population subgroup's ancestries, levels of income, educational attainment, and acculturation. Failing to do so may preclude opportunity to understand, as well as to attenuate, cancer disparity.

The Cancer Information Service: Using CBPR in Building Community Capacity

The National Cancer Institute's (NCIs) Cancer Information Service (CIS) Partnership Program followed many of the key principles of community-based participatory research in providing technical assistance to partner organizations. Using five case studies, this article describes how the CIS Partnership Program served to identify community needs and leaders, bringing resources together to build capacity and increase knowledge, and facilitate further dissemination of findings. CIS Partnership Program staff transcended the traditional health education role by building the capacity of community partners to bring cancer information in culturally appropriate ways to their own communities. The lessons learned by the CIS Partnership Program are useful for both academics and service organizations that would benefit from working with medically underserved communities.

Patient-Centered Communication in Cancer Care: The Role of the NCI’s Cancer Information Service

While patient-centered care and the reduction of suffering due to cancer are primary goals of the NCI, improvement in the delivery of patient-centered communication has been identified as a key NCI research priority. As research on patient-centered communication evolves, the potential contributions of programs such as the National Cancer Institute's (NCI) Cancer Information Service (CIS) cannot be overlooked. The purpose of this paper is to describe how the six core functions of patient-clinician communication described in the literature (fostering healing relationships, exchanging information, responding to emotions, managing uncertainty, making decisions and enabling patient-self management) are embedded in the work of the CIS. The communication process used by the CIS to extend the patient-centered communication role of the clinician will be discussed. CIS training and quality management systems will be described. Lastly, suggestions for the role of CIS in future health information delivery and research will be explored.

Acculturative and neighborhood influences on subjective social status among Spanish-speaking Latino immigrant smokers.

Subjective social status (SSS) reflects an individual's perception of her/his relative position in the social hierarchy. However, little is known about culturally-relevant, multilevel predictors of low SSS among low socioeconomic status (SES), minority populations. The goal of this study was to identify individual- and neighborhood-level variables predicting SSS among 297 Spanish-speaking Latino immigrant smokers living in several locations in Texas, with an emphasis on the association of SSS with acculturative and socioeconomic variables. Participants were recruited and enrolled through the National Cancer Institute's Cancer Information Service from August 2002 to March 2004. Determinants of SSS were explored using a series of linear regressions. In analyses adjusting for demographics (including objective indicators of SES), speaking Spanish at home and work and living in economically disadvantaged neighborhoods, respectively, were associated with low SSS. However, in analyses including demographics, acculturation, and neighborhood characteristics, only income, education, and acculturation remained associated with SSS. Consistent with results from a previous study in the area (Franzini & Fernandez-Esquer, 2006), less acculturation predicted low SSS among immigrant Latino smokers. However, unlike previous research, these associations were maintained after controlling for SES. Results suggest that the density of less acculturated Latinos within economically deprived neighborhoods might account for the disappearance of neighborhood effects in the final model.

Using the word ‘cancer’ in communication about an abnormal Pap test: Finding common ground with patient–provider communication

Objective To investigate provider and patient views about communication regarding cervical cancer screening follow-up. Methods Using qualitative analysis, we interviewed 20 providers and 10 patients from two urban clinics that serve low-income African American and Hispanic women. Semi-structured interviews and focus groups assessed familiarity with National Cancer Institute's Cancer Information Service (CIS) and reactions to a letter asking women with abnormal Pap test to telephone CIS. The letter suggested questions to ask prior to receiving follow-up. Results No patient or provider was familiar with CIS. Providers but not patients expressed discomfort with use of the word ‘cancer’ in the letter and in CIS's name. Providers feared that reference to cancer would provoke fatalism and impede timely follow-up, whereas patients felt information about cancer risk was needed to prompt timely follow-up. Information providers found necessary to convey in order to accurately explain abnormal Pap tests surpassed patients’ literacy levels. Conclusion Qualitative data suggest important gaps in perspective between providers and patients. There is a need to bridge the gap and overcome communication challenges to promote timely medical follow-up and have better health outcomes. Practice implications Implications and strategies for improving patient–provider education and communication about abnormal Pap test are discussed.

Increasing the Effectiveness of Tobacco Quitlines

Increasing the Effectiveness of Tobacco Quitlines

ACCISS study rationale and design: activating collaborative cancer information service support for cervical cancer screening.

BackgroundHigh-quality cancer information resources are available but underutilized by the public. Despite greater awareness of the National Cancer Institute's Cancer Information Service among low-income African Americans and Hispanics compared with Caucasians, actual Cancer Information Service usage is lower than expected, paralleling excess cancer-related morbidity and mortality for these subgroups. The proposed research examines how to connect the Cancer Information Service to low-income African-American and Hispanic women and their health care providers. The study will examine whether targeted physician mailing to women scheduled for colposcopy to follow up an abnormal Pap test can increase calls to the Cancer Information Service, enhance appropriate medical follow-up, and improve satisfaction with provider-patient communication.Methods/DesignThe study will be conducted in two clinics in ethnically diverse low-income communities in Chicago. During the formative phase, patients and providers will provide input regarding materials planned for use in the experimental phase of the study. The experimental phase will use a two-group prospective randomized controlled trial design. African American and Hispanic women with an abnormal Pap test will be randomized to Usual Care (routine colposcopy reminder letter) or Intervention (reminder plus provider recommendation to call the Cancer Information Service and sample questions to ask). Primary outcomes will be: 1) calls to the Cancer Information Service; 2) timely medical follow-up, operationalized by whether the patient keeps her colposcopy appointment within six months of the abnormal Pap; and 3) patient satisfaction with provider-patient communication at follow-up.DiscussionThe study examines the effectiveness of a feasible, sustainable, and culturally sensitive strategy to increase awareness and use of the Cancer Information Service among an underserved population. The goal of linking a public service (the Cancer Information Service) with real-life settings of practice (the clinics), and considering input from patients, providers, and Cancer Information Service staff, is to ensure that the intervention, if proven effective, can be incorporated into existing care systems and sustained. The approach to study design and planning is aimed at bridging the gap between research and practice/service.Trial RegistrationNCT00873288

Cancer Prevention Information Seeking: A Signal Detection Analysis of Data From the Cancer Information Service

Communication and health information seeking play a significant role in the promotion of cancer prevention behaviors, including screening. Data from a sample of information seekers who contacted the National Cancer Institute's (NCI's) Cancer Information Service (CIS; N = 20,412) were split randomly into an exploratory and validation sample to conduct signal detection analysis predicting cancer prevention information seeking. Important predictors of seeking prevention information in the exploratory sample were type of information seeker, communication channel, age, and gender; these findings generally were confirmed in the validation sample. Our findings also reveal important information about the demographic characteristics and communication channel preferences of cancer prevention information seekers.

Cancer Prevention Information-Seeking Among Hispanic and Non-Hispanic Users of the National Cancer Institute's Cancer Information Service: Trends in Telephone and LiveHelp Use

Evidence-based strategies to enable, encourage, and support cancer prevention information seeking among Hispanic populations are needed. We examined cancer prevention information requests to the Cancer Information Service (CIS) via telephone (1-800-4-CANCER toll-free telephone information service) and LiveHelp (an instant messaging service provided in English only) from 2003 to 2006. We summarized differences in the communication channel utilized by ethnicity (Hispanic vs. non-Hispanic) and, among Hispanic information seekers, the language used during the contact (English vs. Spanish). Utilization of LiveHelp was higher among non-Hispanic than Hispanic seekers of cancer prevention information. LiveHelp use for seeking cancer prevention information increased between 2003 and 2006 for both groups, but the increase was greater among non-Hispanics than Hispanics. Nearly half of Hispanics who sought cancer prevention information did so in Spanish. Because LiveHelp is not available in Spanish, the number of Spanish-only speakers who preferred to contact CIS via LiveHelp instead of telephone is unknown. When communicating cancer prevention information via multiple channels, it is important to consider differences in access to communication technologies and preferred communication channels among ethnic minority groups.

Barriers to Seeking Cancer Information Among Spanish-Speaking Cancer Survivors

Hispanics face barriers in seeking cancer information from sources such as the National Cancer Institute's Cancer Information Service. Their cancer screening rates are lower than those for whites. Three focus groups were conducted with 40 Spanish-speaking cancer survivors. Few patients had used a toll-free telephone number to get cancer information. Only five had used the Internet. Fear of feeling worse was a common concern in seeking cancer information, as was trying to discuss their cancer in English. Spanish language media promotions were recommended. Beliefs and attitudes about cancer must be taken into account when developing culturally competent education programs for Spanish speakers.

Promoting participation in physical activity using framed messages: An application of prospect theory

Messages designed to motivate participation in physical activity usually emphasize the benefits of physical activity (gain-framed) as well as the costs of inactivity (loss-framed). The framing implications of prospect theory suggest that the effectiveness of these messages could be enhanced by providing gain-framed information only. We compared the effectiveness of gain-, loss-, and mixed-framed messages for promoting moderate to vigorous physical activity. Randomized trial. Sedentary, healthy callers to the US National Cancer Institute's Cancer Information Service (N=322) received gain-, loss-, or mixed-framed messages on three occasions (baseline, Week 1, and Week 5). Social cognitive variables and self-reported physical activity were assessed at baseline, Week 2, and Week 9. Separate regression analyses were conducted to examine message effects at each assessment point. At Week 2, gain- and mixed-framed messages resulted in stronger intentions and greater self-efficacy than loss-framed messages. At Week 9, gain-framed messages resulted in greater physical activity participation than loss- or mixed-framed messages. Social cognitive variables at Week 2 did not mediate the Week 9 framing effects on physical activity participation. Using gain-framed messages exclusively may be a means of increasing the efficacy of physical activity materials.

The NCI's Cancer Information Service's Research Continuum Framework: integrating research into cancer education practice (1999-2004).

Between 1999 and 2004, the National Cancer Institute's (NCI) Cancer Information Service's (CIS) Research Initiative supported over 50 research projects representing a broad range of activities from research capacity building, development, implementation to diffusion and dissemination. These research activities are represented in the CIS Research Continuum Framework which the authors describe through a number of short case studies. Based on the experiences and successes of the CIS, other professionals working in the cancer field might consider establishing collaborative relationships across the research continuum and participating in research that has relevancy to advances in cancer education.