Cancer Information Service Research Articles

Disparities in cancer clinical trials information-seeking: Findings from the National Cancer Institute’s Cancer Information Service

ObjectiveTo better understand cancer clinical trials (CCT) information-seeking, a necessary precursor to patient and provider engagement with CCT. MethodsData 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. ResultsBetween 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. ConclusionsDisparities in CCT information-seeking may contribute to downstream CCT participation. Practice ImplicationsQuality, language-concordant health information is needed to enable equitable awareness of – and ultimately engagement in – CCT.

Incidence, mortality, survival, and treatment statistics of cancers in digestive organs-Japanese cancer statistics 2024.

Access to accurate statistical data is paramount in the pursuit of effective cancer control activities, including research, policy development, and clinical care. This paper presents a comprehensive statistical report on the incidence, mortality, survival, and treatment of major digestive organ cancers, including those of the esophagus, stomach, colon, rectum, liver, extrahepatic biliary tract, and pancreas, in Japan. We compiled data from the National Cancer Center's "Cancer Information Services" and government "e-Stat" websites and offered a succinct overview of basic statistics by using tables and graphical presentations. Our findings underscore the critical role of the National Cancer Registry introduced by the Cancer Registry Act of 2016, which mandates hospitals across Japan to report cancer cases. This system ensures more accurate incidence statistics. Mortality data sourced from the National Vital Statistics System and survival rates derived from hospital-based cancer registries offer insights into the outcomes and efficacy of treatment modalities. These data indicate a downward trend in mortality for stomach and liver cancers and stable or declining rates for other cancers except pancreatic cancer, which has the lowest survival rate. Treatment patterns indicate an increase in endoscopic procedures for esophageal and stomach cancers, with stable treatment approaches for colorectal cancer. This statistical overview aims to improve the understanding and inform research, policy, and clinical decisions in the field of digestive organ cancers.

What is the economic and social return on investment for telephone cancer information and support services in Australia? An evaluative social return on investment study protocol

IntroductionOver 50% of people affected by cancer report unmet support needs. To address unmet information and psychological needs, non-government organisations such as Cancer Councils (Australia) have developed state-based telephone cancer...

Exploring important service characteristics of telephone cancer information and support services for callers: protocol for a systematic review of qualitative research

IntroductionAs cancer incidence continues to rise, challenges remain in how to communicate accurate, timely information to people with cancer, their families and healthcare professionals. One option is to provide support...

Improving the Quality of Care for Cancer Patients through Oncological Second Opinions in a Comprehensive Cancer Center: Feasibility of Patient-Initiated Second Opinions through a Health-Insurance Service Point

Background: To improve the quality and cost-effectiveness of care, cancer patients can obtain a second medical opinion on their treatment. Validation of the diagnostic procedure (e.g., imaging), diagnosis, and treatment recommendation allows oncological therapy to be applied in a more targeted way, optimizing interdisciplinary care. This study describes patients who received second opinions at the Comprehensive Cancer Center for Erlangen–Nuremberg metropolitan area in Germany over a 6-year period, as well as the amount of time spent on second-opinion counseling. Methods: This prospective, descriptive, single-center observational study included 584 male and female cancer patients undergoing gynecological, urologic, or general surgery who sought a second medical opinion. The extent to which the first opinion complied with standard guidelines was assessed solely descriptively. Results: The first opinion was in accordance with the guidelines and complete in 54.5% of the patients, and guideline compliant but incomplete in 13.2%. The median time taken to form a second opinion was 225 min, and the cancer information service was contacted by patients an average of eight times. Conclusions: The initial opinion was guideline compliant and complete in every second case. Without a second opinion, the remaining patients would have been denied a guideline-compliant treatment recommendation. Obtaining a second opinion gives patients an opportunity to receive a guideline-compliant treatment recommendation and enables them to benefit from newer, individualized therapeutic approaches in clinical trials. Establishing patient-initiated second opinions via central contact points appears to be a feasible option for improving guideline compliance.

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.

Intentions of Patients With Cancer and Their Relatives to Use a Live Chat on Familial Cancer Risk: Results From a Cross-Sectional Web-Based Survey.

An important prerequisite for actively engaging in cancer prevention and early detection measures, which is particularly recommended in cases of familial cancer risk, is the acquisition of information. Although a lot of cancer information is available, not all social groups are equally well reached because information needs and communicative accessibility differ. Previous research has shown that a live chat service provided by health professionals could be an appropriate, low-threshold format to meet individual information needs on sensitive health topics such as familial cancer risk. An established German Cancer Information Service is currently developing such a live chat service. As it is only worthwhile if accepted by the target groups, formative evaluation is essential in the course of the chat service's development and implementation. This study aimed to explore the acceptance of a live chat on familial cancer risk by patients with cancer and their relatives (research question [RQ] 1) and examine the explanatory power of factors associated with their intentions to use such a service (RQ2). Guided by the Extended Unified Theory of Acceptance and Use of Technology (UTAUT2), we examined the explanatory power of the following UTAUT2 factors: performance expectancy, effort expectancy, social influence, facilitating conditions, and habit, supplemented by perceived information insufficiency, perceived susceptibility, perceived severity, and cancer diagnosis as additional factors related to information seeking about familial cancer. We conducted a cross-sectional survey via a German web-based access panel in March 2022 that was stratified by age, gender, and education (N=1084). The participants are or have been diagnosed with cancer themselves (n=144) or have relatives who are or have been affected (n=990). All constructs were measured with established scales. To answer RQ1, descriptive data (mean values and distribution) were used. For RQ2, a blockwise multiple linear regression analysis was conducted. Overall, 32.7% of participants were (rather) willing, 28.9% were undecided, and 38.4% were (rather) not willing to use a live chat on familial cancer risk in the future. A multiple linear regression analysis explained 47% of the variance. It revealed that performance expectancy, social influence, habit, perceived susceptibility, and perceived severity were positively associated with the intention to use a live chat on familial cancer risk. Effort expectancy, facilitating conditions, information insufficiency, and cancer diagnosis were not related to usage intentions. A live chat seems promising for providing information on familial cancer risk. When promoting the service, the personal benefits should be addressed in particular. UTAUT2 is an effective theoretical framework for explaining live chat usage intentions and does not need to be extended in the context of familial cancer risk.

Understanding Trust Determinants in a Live Chat Service on Familial Cancer: Qualitative Triangulation Study With Focus Groups and Interviews in Germany.

In dealing with familial cancer risk, seeking web-based health information can be a coping strategy for different stakeholder groups (ie, patients, relatives, and those suspecting an elevated familial cancer risk). In the vast digital landscape marked by a varied quality of web-based information and evolving technologies, trust emerges as a pivotal factor, guiding the process of health information seeking and interacting with digital health services. This trust formation in health information can be conceptualized as context dependent and multidimensional, involving 3 key dimensions: information seeker (trustor), information provider (trustee), and medium or platform (application). Owing to the rapid changes in the digital context, it is critical to understand how seekers form trust in new services, given the interplay among these different dimensions. An example of such a new service is a live chat operated by physicians for the general public with personalized cancer-related information and a focus on familial cancer risk. To gain a comprehensive picture of trust formation in a cancer-related live chat service, this study investigates the 3 dimensions of trust-trustor, trustee, and application-and their respective relevant characteristics based on a model of trust in web-based health information. In addition, the study aims to compare these characteristics across the 3 different stakeholder groups, with the goal to enhance the service's trustworthiness for each group. This qualitative study triangulated the different perspectives of medical cancer advisers, advisers from cancer support groups, and members of the public in interviews and focus group discussions to explore the 3 dimensions of trust-trustor, trustee, and application-and their determinants for a new live chat service for familial cancer risk to be implemented at the German Cancer Information Service. The results indicate that experience with familial cancer risk is the key trustor characteristic to using, and trusting information provided by, the live chat service. The live chat might also be particularly valuable for people from minority groups who have unmet needs from physician-patient interactions. Participants highlighted trustee characteristics such as ability, benevolence, integrity, and humanness (ie, not a chatbot) as pivotal in a trustworthy cancer live chat service. Application-related characteristics, including the reputation of the institution, user-centric design, modern technology, and visual appeal, were also deemed essential. Despite the different backgrounds and sociodemographics of the 3 stakeholder groups, many overlaps were found among the 3 trust dimensions and their respective characteristics. Trust in a live chat for cancer information is formed by different dimensions and characteristics of trust. This study underscores the importance of understanding trust formation in digital health services and suggests potential enhancements for effective, trustworthy interactions in live chat services (eg, by providing biographies of the human medical experts to differentiate them from artificial intelligence chatbots).

Transgender and Gender-Nonconforming Populations Experience Unique Challenges in Health Information Environment Developed for Heteronormative Audience

A Review of: Tenny, C. S., Surkan, K. J., Gerido, L. H., & Betts-Green, D. (2021). A crisis of erasure: Transgender and gender-nonconforming populations navigating breast cancer health information. The International Journal of Information, Diversity, & Inclusion, 5(4), 132–149. https://doi.org/10.33137/ijidi.v5i4.37406 Objective – To understand the lived experiences of transgender and gender-nonconforming populations in seeking health information about breast cancer. Design – Thematic literature review. Setting – Four English-language databases featuring clinical, patient engagement, and library and information sciences (LIS) research. Subjects – Twenty-one published articles. Methods – The researchers chose three concepts (trans, LGBTQ+, and breast cancer), identified related terms for each, and used these terms to conduct literature searches in four databases: PubMed, Web of Science, Library Literature & Information Science Full Text, and Library, Information, Science & Technology Abstracts. Search results were reviewed for relevance to the research objective. The researchers applied grounded theory to analyze the 21 selected articles through open, axial, and selective (thematic) coding. The qualitative research software NVivo was used to perform thematic analysis of each article, and a shared codebook was developed to ensure saturation of axial themes and consistency of coding amongst researchers. Main Results – Three overarching themes emerged from selective coding that exemplify experiences of transgender and gender-nonconforming persons seeking health information about breast cancer: access, erasure, and quality. Compared to their cisgender peers, these historically marginalized populations and their caregivers experience more difficulty accessing the already limited breast cancer information, healthcare, and support services suited to their needs. In particular, transgender and gender-nonconforming patients are often burdened with choosing between receiving health information and care designed for heteronormative persons and risking self-disclosure and possible discrimination by culturally incompetent health professionals. Conclusion – The researchers noted the alarmingly limited resources available for gender-nonconforming patients seeking information and support for health matters other than mental health or sexually transmitted diseases. The researchers also called for increased efforts by LIS curriculums and professionals to study and understand the needs of transgender and gender-nonconforming patrons, and to improve the quality and quantity of information resources specifically dedicated to these unique populations.

Abstract P6-05-60: People with metastatic breast cancer face barriers to finding information and support

Abstract People with metastatic breast cancer face barriers to finding information and support Background FORCE, a national nonprofit organization developed a health communication tool to help patients assess research relevance, key findings, and the quality of media reporting on cancer to support informed and shared health decision-making. People with metastatic breast cancer (mBC) are a priority population. Methods The organization conducted a survey about awareness of and access to breast cancer information and supportive services for people living with metastatic breast cancer. The organization promoted the survey through e-mail and social media, and a network of partner organizations that serve the metastatic breast cancer community. The survey invited respondents to volunteer to participate in focus groups and a follow-up survey in order to support efforts to serve this priority population. Results and Conclusions While interest in clinical trials was high, many users reported that thy do not know how to find an appropriate clinical trial. A majority of the 335 respondents were interested in information about clinical trials, treatment side effects, research findings, long-term health issues, diet/exercise, fatigue, and emotional health. Three quarters of the respondents indicated that they had never participated in a clinical trial, 67% indicated they would be interested in participating in the future, and about 40% indicated they did not know how to find a clinical trial recruiting people with metastatic breast cancer. Approximately one-third of participants were unable to obtain referrals to services they sought. Other barriers to services included lack of insurance coverage, lack of availability, and the COVID-19 public health emergency. Focus group responses indicate that women with mBC find the health communication tool to be useful, and appropriate in language, images, and tone. Results indicate that women with mBC are interested in finding information about clinical trials and other topics related to treatment side effects and quality of life. FORCE and partners are incorporating these results into tailored online resources to meet the needs of the mBC community. Citation Format: Robin H. Pugh-Yi, Piri Welcsh, Kelly Owens, Diane Rose, Erica Kuhn, Craig T. Dearfield, Susan Friedman. People with metastatic breast cancer face barriers to finding information and support [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-60.

Between hope and reality: How oncology physicians and information providers of a cancer information service manage patients' expectations for and experiences with immunotherapies

ObjectivesImmune checkpoint inhibitors have established themselves as a further therapeutic pillar in the treatment of various types of cancer. This can create challenges and possible misunderstandings for patients. The aim of this study was to assess the experiences of physicians and information providers in their interactions with patients about immunotherapy. MethodsThe study design was exploratory with qualitative research methodology. We performed focus groups with 8 oncology physicians and 9 information providers of a cancer information service. ResultsIn the coding process, five focal points could be identified: (1) image of immunotherapy, (2) presentation of immunotherapy in the media, (3) hope, (4) creation of an information base, and (5) lessons learned and future directions. Physicians and information providers report that immunotherapy has a very positive image among patients. This seems to be due to the presentation of immunotherapy in the media and the positive associations of people with terms such as the immune system and the body's own defense. ConclusionsIn contrast to chemotherapy, patients are at risk of underestimating the early symptoms of serious side effects of immunotherapy. From the point of view of physicians, the exaggerated expectations of patients regarding the possibilities of immunotherapy are often not met. The challenge for practitioners is to consider patients' expectations to provide balanced information and recommendations. Practical implicationsCommunication skills training and up-to-date information tools should improve physician–patient communication.

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.

Preferred and perceived participation roles of oncological patients in medical decision-making: Results of a survey among users of the German Cancer Information Service

BackgroundCancer patients are facing a variety of treatment and other disease-related decisions. This study aims to provide insights into preferred and perceived participation roles in decision-making among patients with diverse tumors using the German Cancer Information Service (CIS). MethodsPatients’ decision-making preferences and experiences were assessed as a part of a cross-sectional survey among CIS users. An adapted version of the Control Preferences Scale (CPS) was used to assess preferred and perceived participation roles in eight different areas of medical decision-making (e.g., choice of medication, termination of treatment). Logistic regression analyses were applied to explore preference matching and to analyze associations between participation roles and sociodemographic variables. Moreover, we examined preferences and perceptions of participation roles across different decision situations. ResultsIn the final sample (N = 1566, 64.9% female, mean age = 61.6), almost half of the patients (47.1%) preferred to take a collaborative role in decisions on treatment methods, whereas 36.3% preferred an active role and 15.9% a passive role. Collaborative role preferences frequently (40.7%) coincided with experiencing a passive role and predicted a reduced chance of a match between preferences and experiences (OR = 0.57, p = .001). A higher level of education was associated with a lower chance of preferring and perceiving a passive role (OR = 0.85, p < .01). Compared with men, women had increased odds of preferring (OR = 1.45, p < .05) and of actually taking (OR = 2.04, p < .001) a passive role in medical encounters. Preferred participation roles regarding treatment methods were highly correlated with preferences in all other decision areas (r > .50, p < .001) except decisions about family involvement. ConclusionsThe study reveals well-known deficits in the fulfilment of patients’ collaborative role preferences across different areas of medical decision-making in a sample of CIS users characterized by high information-seeking behavior. Participation roles were not only influenced by the patients' level of education but also by their gender. The gender effect may be more pronounced than previous studies suggest. These effects should be considered in the development of interventions to promote shared decision-making. Additionally, study results indicate that preferences for participation in decisions about treatment methods, as assessed by the CPS, can be generalized to other areas of medical decision-making.

Recent Increase in the Breast Cancer Incidence Among Japanese Women Seems to Correlate With the Prevalence of Drinking and Smoking Habits, but Not Obesity, as a Modern Lifestyle

ObjectivesWe have recently reported that age-specific incidence rates of breast cancer among Japanese women clearly increased from 2000 to 2015 in a bimodal distribution pattern with two peaks at the age groups of 45 to 49 and 60 to 64 years. The present study aimed to assess the association of age-specific breast cancer incidence rates with the prevalence of obesity and drinking and smoking habits among Japanese women, compared with those of uterine body, colon and lung cancers. MethodsAge-specific cancer incidence and mortality rates and the prevalence of obesity and drinking and smoking habits were obtained from national data published by Cancer Information Services or National Institute of Health and Nutrition of Japan. Linear correlations of annual rates from 2005 to 2015 of the 10-year age-specific cancer incidence and mortality with the prevalence of obesity (body mass index, 25 and over) and drinking (alcohol, 20g and over 3 times or more a week) and smoking habits during the same 10-year period or the 10-year period 10 years before the cancer incidence and mortality were assessed by Pearson’s correlation coefficients. ResultsSignificant (p < 0.05) and positive correlations were found between breast cancer incidence and drinking habits during the same period at the age of 50–59 (r = 0.901), 60–69 (r = 0.808) and 70–79 years (r = 0.643) and during the 10-year-before period at 50–59 (r = 0.676); between the incidence and smoking habits during the 10-year-before period at 40–49 (r = 0.897), 50–59 (r = 0.731) and 60–69 (r = 0.696); between the mortality and drinking habits during the same period at 30–39 (r = 0.739), 60–69 (r = 0.817) and 70–79 (r = 712); and between the mortality and smoking habits during the same period at 30–39 (r = 0.733) and during the 10-year-before period at 60–69 (r = 0.663). Similar but less positive correlations for uterine body cancer or more positive correlations for male lung cancer were found. The prevalence of male drinking and smoking habits was decreasing during the 20 years. No positive correlations were found between the breast cancer incidence or mortality and the prevalence of obesity. ConclusionsThe present ecological study demonstrated that the prevalence of drinking and smoking habits, but not obesity, as a modern lifestyle correlated with the recent increase in the age-specific breast cancer incidence among Japanese women. Funding SourcesNone.

The COVID-19 Pandemic and Cancer Patients in Germany: Impact on Treatment, Follow-Up Care and Psychological Burden.

In response to the ongoing coronavirus disease 2019 (COVID-19) pandemic, governments imposed various measures to decrease the rate of disease spread, and health care policy makers prioritized resource allocation to accommodate COVID-19 patients. We conducted a cross-sectional online survey in Germany (July 2020–June 2021) to assess the frequency of changes to cancer care among cancer patients and to explore the psychological impact of the pandemic writ large. Cancer patients who contacted the Cancer Information Service (Krebsinformationsdienst, KID) of the German Cancer Research Center (Deutsches Krebsforschungszentrum, DKFZ) via email were invited to complete an online questionnaire, capturing demographics, cancer specifics (e.g., type, disease phase, primary place of treatment, etc.), and any changes to their medical, follow-up, psycho-oncological or nursing care. General level of psychological distress was measured using the Hospital Anxiety and Depression Scale (HADS) along with face-validated items regarding worries and social isolation specific to the pandemic. In total, 13% of 621 patients reported a change to their treatment or care plan. Of those patients with changes, the majority of changes were made to follow-up care after treatment (56%), to monitoring during treatment (29%) and to psychological counseling (20%). Of the overall sample, more than half of patients (55%) reported symptoms of anxiety and 39% reported symptoms of depression. Patients with a change in cancer care were more likely to report symptoms of depression than those with no change (AOR: 2.18; 95% CI: 1.26–3.76). Concern about the pandemic affecting the quality of health care was a predictor of both anxiety (AOR: 2.76; 95% CI: 1.75–4.35) and depression (AOR: 2.15; 95% CI: 1.43–3.23). Results showed that the majority of cancer patients in our study did not experience a change in their cancer care. However, the level of anxiety and psycho-social burden of cancer patients during the pandemic was high throughout the study period. Our findings underscore the need for health care services and policy makers to assess and to attend cancer patients' medical needs, with added emphasis on patients' psychological and social well-being. This applies particularly in situations where the healthcare system is strained and prioritization is necessary.

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&amp;lt;.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&amp;lt;.001), whereas other cancer inquiries decreased. Additionally, Spanish-speaking telephone-based inquiries increased during COVID-19 whereas all other points of access decreased (p&amp;lt;.001); subjects of interaction regarding general cancer questions increased, but those on finding healthcare services, screening tests, and other subjects decreased (p&amp;lt;.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&amp;lt;.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.

Users’ evaluation of Japan’s cancer information services: process, outcomes, satisfaction and independence

BackgroundCancer information service (CIS) programmes are becoming increasingly important because patients need to obtain appropriate information and take an active role in their treatment decisions. Programme evaluation is required to...

Pancreatic Cancer

Pancreatic cancer ranks 4th among men and 3rd among women in terms of cancer-related deaths according tothe Cancer Information Service of the National Cancer Center website. The morbidity and mortality are similar,the mortality rate when affected is very high, and the 5-year survival rate for all pancreatic cancer cohorts is 5% to10%, which is the poorest prognosis among several malignant diseases. However, there is much room for improving treatment outcomes.Surgical resection is the only treatment that can be expected to cure pancreatic cancer, but the recurrence rateafter curative resection is very high. It is often the case that it is already unresectable at the time of diagnosis.Regarding surgical resection, despite various surgical improvements, the 5-year survival rate of surgery alone remains at approximately 10% to 20%, and chemotherapy is used not only in unresectable cases but also in resectedcases. The importance of multidisciplinary treatment is increasing.The paper outlines the significance of surgical resection for pancreatic cancer, the evolution of chemotherapy,and future prospects.

Understanding the Pathway of Cancer Information Seeking: Cancer Information Services as a Supplement to Information from Other Sources

Cancer information services (CISs) can play an important role within the pathway of cancer information seeking, but so far, this role is not well understood. Callers (n = 6,255) who contacted the largest provider of cancer information in Germany participated in a survey in which they reported their information sources, information level, and needs leading to the call. Persons with prior information from a physician (n = 1,507) were compared to people with prior online information (n = 901) and people with prior information from both sources (n = 2,776). Nearly all callers (96.7%) stated prior sources, while physicians and the Internet were the most frequently reported sources. People, who only talked to a doctor before, are more likely to be a patient and in the disease stages during/after the first treatment or with recurrence than prior Internet users. The two groups do not differ in their prior information level but did differ in their information needs. CISs are an important supplement to other sources, while the information repertoire depends on patients’ stages during the cancer journey. Specific characteristics and needs of callers with different prior information sources help to individualize the service of CISs and similar providers.

Referral and uptake of services by distressed callers to the Cancer Council Information and Support telephone service.

Patient-centered cancer care includes emotional, informational, and practical support that is personalised to the needs of patients and inclusive of family and friends. However, when supportive care referrals are offered in hospital settings, distressed patients and carers do not consistently act on those referrals, which can prolong patient suffering. The degree to which sub-optimal referral uptake also occurs in Australian telephone support services is unknown. To report, among a sample of distressed patients and caregivers who called a cancer information and support service: 1) the types of services used; 2) proportion who received and actioned a referral (uptake); 3) associations between referral to a service and callers' characteristics); and, 4) associations between uptake of a referred service and callers' characteristics. This study used cross-sectional data collected at 3-month post-baseline from control participants (usual care group) enrolled in the Structured Triage and Referral by Telephone (START) trial. The START trial recruited distressed adult cancer patients and caregivers from the Cancer Council Information and Support Service (CIS). A research assistant conducted a 30-45 min telephone interview with participants, which included recall of referrals provided by CIS staff and reported uptake of referral(s) to the offered service types. Most patients (98%) and caregivers (97%) reported receiving a referral to a service. For patients and caregivers respectively, information materials (71%, 77%), CIS call-back (51%, 43%), practical services (52%, 45%), and group peer support (49%, 51%) were the services most frequently offered. For callers receiving a referral, uptake was highest for information materials (91%) and CIS call-backs (89%) and lowest for specialist psychological services (30%). Significant association was found between older age and reduced uptake of services (p = 0.03). The high uptake rate of CIS call-backs suggests it is a potentially more acceptable form of support compared to specialist psychological services. Efforts to reduce the barriers to telephone-based psychological services are required. Specifically, older age peoples' and caregivers' preferences for support and priorities who may benefit from a referral coordinator.