4C-1: What is cancer education today, who is it for and where is it going? A review of the breadth and trends in the contemporary cancer education research literature.

Charles Kelly
European Association for Cancer Education, Newcastle upon Tyne, UK

Abstract: Background: A speciality is partially defined by its research literature.Cancer education covers a wide field of information giving, education and training with differing aims and objectives for the needs of its different target audiences. In the past, resources for cancer education for patients and carers where relatively sparse but in the last two decades there has been an unprecedented expansion in educational resources for patients, their families and caregivers. Method: This review examines four years of the published cancer education literature 2010 – 2014, and uses a series of search terms dealing with a range of formal educational topics,such as curricular development and pedagogy, undergraduate and graduate and multi-professional and individual professional education and training.It also covers patient and carer education & screening and education facilitating underserved populations.The role and context of the Journal of Cancer Education, when compared to other medical education and patient education publications is considered. Results: There is a very wide range of topics published under the broad heading of cancer education but a relatively small minority devoted to formal educational topics such as curricular development and pedagogy. the exception to this is the growth in the literature on assessment. Most publications for medical, nursing and allied health professional education deal with practical training. The majority of the literature however is now devoted to educational topics for patients and carers, especially dealing with those tumours where there are active screening programs. Discussion: Cancer education is moving from medical schools to the community. How this change occurs will affect all cancer educators. Relation to Theme: This is a broad overview of the contemporary cancer education literature, what trends and priorities are developing and how these effect diverse audiences and underserved populations. Learning Objectives: The participant shall be able to see the breadth and number of diverse topics contained within contemporary cancer education literature and the relative proportions of particular subjects being published, which trends and priorities can be seen in current publications,and especially in context, the expansion of patient and carer education. References: 1. Cancer education and effective dissemination: information access is not enough AL Ousley, JA Swarz, EL Milliken, S Ellis – Journal of Cancer Education, 2010. 2. The experience of symptoms and information needs of cancer patients undergoing radiotherapy GN Güleser, S Taşci, B Kaplan – Journal of Cancer Education, 2012. 3. Effective teaching strategies and methods of delivery for patient education: a systematic review and practice guideline recommendationsAJ Friedman, R Cosby, S Boyko, J Hatton-Bauer Journal of Cancer Education, 2011.

4C-2: Barriers to cancer clinical trials accrual among people living with HIV/AIDS

Georgia Robins Sadler¹, John Horton¹, Ida Wong-Sefidan^1.2, Nabhan F Jankeel¹, Alexander G Reich¹, Jane Diamond¹, William Wachsman^1,2
1University of California at San Diego Moores Cancer Center, La Jolla, CA, USA, ²VA San Diego Health Care System, La Jolla, CA, USA

Abstract: Background: Clinical trials changed HIV/AIDS from a fatal disease to a chronic disease, significantly extending life expectancy for people living with HIV/AIDS (PLWHA). However, PLWHA are now developing cancers at rates disproportionate to the general population and doing so at younger ages. Cancer is now a leading cause of death in the HIV/AIDS population. Unlike the HIV/AIDS community’s earlier pattern of championing and engaging in research to find ways to control HIV/AIDS, recruiting PLWHA to cancer clinical trials has now become a rate limiting step for clinical scientists searching for optimal treatment strategies to manage both HIV/AIDS and cancer simultaneously. This slow accrual to clinical trials is not unique to cancer studies, but the management of cancer among PLWHA is substantially more difficult than in the non-HIV/AIDS population. Finding ways to integrate the highly toxic treatment options for both diseases safely is one of the most critical clinical issues. Since PLWHA are routinely excluded from most cancer clinical trials, it is all the more critical that those that include PLWHA accomplish their participant recruitment goals quickly. Methods: This research team conducted three pilot studies with HIV/AIDS clinical and scientific professionals, as well as with the community of PLWHA to gain a better understanding of the various factors that trigger this slow accrual to clinical trials among PLWHA and how they could be most effectively addressed. Results: From the summative findings, four main categories of barriers to cancer clinical trials participation were identified: 1) insufficient marketing, advertising, and public and individual education; 2) individual perspectives; 3) the research process itself; and 4) the perspectives and view of the HIV/AIDS community. Discussion: Reducing most identified barriers could be accomplished with relative ease and speed, but few resources are available to implement the obvious solutions that could address the bulk of the barriers. Relation to Theme: Cancer is now the leading cause of death among people living with HIV/AIDS. Clinical management of both diseases simultaneously is substantially more challenging than the management of cancer alone. This research lays the foundation for developing effective strategies for raising awareness of the importance of clinical trials participation in this community. Learning Objectives: The participants will learn about the barriers to cancer clinical trials participation from the perspective of people who are living with HIV/AIDS, as well as some strategies that the community believes will help to reduce those barriers. References: 1. Deeken JF, Tjen-A-Looi A, Rudek MA, Okuliar C, Young MY, Little RF, Dezube BJ. The rising challenge of non-AIDS-defining cancers in HIV-infected patients. Clin Infect Dis 2012;55(9):1228-35. Doi: 10.1093/cid/cis613. Epub 2012 Jul 9. 2. Patel P, Armon C, Chmiel JS, Brooks JT, Buchacz K, Wood K, Novak RM. Factors associated with cancer incidence and with all-cause mortality after cancer diagnosis among human immunodeficiency virus-infected patients. Open Forum Infect Dis. 2014 May 27;1(1):ofu012. doi: 10.1093/ofid/ofu012. eCollection 2014 Mar. PMID: 25734086.

4C-3: Orthodox Jewish Thought Leaders’ Beliefs and Attitudes Regarding Genetic Counseling for BRCA Mutations

Beth Popp, Toby Bressler
Maimonides Cancer Center, Brooklyn, NY, USA

Abstract: Background: Ashkenazi Jewish descendants have a higher incidence of BRCA mutations and a significant increased risk for breast and ovarian cancer. Our medical center serves the largest Orthodox-Jewish population in the US. Experience with healthcare decisions has demonstrated that Orthodox Jews often seek input from their Rabbi or Rabbinic spouses, Rebbetzins, and community organizations. There is speculation regarding these leaders’ views of BRCA testing, yet there is no research to date exploring this topic in this community. Methods: Our aim was to explore and understand views of Rabbis and Rebbetzins in the Orthodox Jewish community on BRCA testing, using qualitative methodology. Ninety-minute focus groups for Rabbis and Rebbetzins were held. Descriptive analysis was used to cull themes from de-identified transcripts of audio recordings of the sessions. Transcripts were read independently for content validity of themes. Results/Findings: Four primary themes were identified: The Rabbi’s role in medical decisions; tampering with G-ds plan; shifting community norms and cancer as a concern. Recommendations include forming educational initiatives for faith-based leaders related to genetic counseling, proactively involving the Rabbi and an enhanced alliance between faith-based leaders and medical professionals in appreciating one another’s roles. Respectful awareness of family and social dynamics and the religious ramifications of genetic testing and counseling is crucial. Discussion: This research provides a deeper understanding of attitudes and beliefs of Orthodox Jewish thought-leaders regarding BRCA testing which can be used in developing community outreach and educational initiatives to meet the needs of this faith-based minority group. Social networks and the opinions of family, friends, community members and faith-based leaders can profoundly impact health care decisions, including the BRCA testing decision. By understanding and incorporating opinions of these thought-leaders, we hope to provide services respectful of this community’s traditions, leading to increased use of genetic counseling and improved health outcomes for this faith based minority and other minorities. Relation to Theme: Our qualitative study examined the beliefs and attitudes of thought leaders in a faith-based minority group with a high incidence of BRCA mutations regarding genetic counseling for cancer risk. Our study outcomes form the basis of educational initiatives related to genetic counseling within this population Learning Objectives: The participant shall be able to identify unique perspectives related to genetic counseling and testing in a minority population and utilize this information to develop educational programs incorporating these perspectives. References: 1. To test of not to test? The role of attitudes, knowledge and religious involvement among US adults on intent-toobtin adult genetic testing. Botoseneanu A, Alexander JA, Banaszak-Holl J. Health Educ Behav. 2011 Dec;38(6):617-28. 2. Corrlates of genetic counseling and tesing among Orthodox Jews. J. Relig Health. 2011 Dec;50(4):796-805. 3. Barriers to cancer screening among Orthodox Jewish women. Tkatch R, Hudson J, Katz A, Berry-Bobovski L, Vichich J, Eggly S, Penner LA, Albrecht TL. J Community Health. 2014 Dec;39(6):1200-8 4. Integrating Genetic and genomic information into effective cancer care in diverse populations. Fashoyin-Aje L, Sanghavi K, Bjornard K, Bodurtha J. Ann Oncol 2013 Oct; 24 Suppl 7:vii48-54. Infect Dis. 2014 May 27;1(1):ofu012. doi: 10.1093/ofid/ofu012. eCollection 2014 Mar. PMID: 25734086.

4C-4: Baseline data on a multi-site study of colorectal cancer screening practices among African American men and women

Deborah Irwin¹, Marc T Kiviniemi², Frances G. Saad-Harfouche¹, Linda Thelemaque³, Karent Zorogastua³, Dee Johnson¹, Nikia Clark¹, Cassandre Dauphin¹, Lina Jandorf^3
1Roswell Park Cancer Institute, Buffalo, NY, USA, ²University at Buffalo, Buffalo, NY, USA, ³Icahn School of Medicine at Mt. Sinai, New York, NY, USA

Abstract: Background/Purpose. Colorectal cancer (CRC) incidence is 20% higher and mortality rates are 18% higher in African Americans compared to Whites. Screening accounts for over 40% of incidence disparities and almost 20% of mortality disparities. Effective CRC screening for African Americans is a critical strategy for reducing these disparities. The goal of the current study is to understand factors influencing the decisions of African Americans to engage in (or not engage in) screening for CRC and to positively impact these factors through community-level intervention strategies. Methods: African American participants (N=986; 75% female) have been recruited in New York City (NYC) and Buffalo, NY (WNY) to attend a one-time intervention program at a community setting. Using a randomized experimental design with pre-post assessments of key dependent variables, participants are randomized to either a narrative communication or a fact-based, didactic video about CRC and screening using colonoscopy and FIT. We are assessing the comparative efficacy of these interventions to influence African Americans’ engagement in screening, including the degree to which they impact cognitive and affective decision making factors. Results: 734 participants (74.5%) were >50 years of age, and of those, 319 (43.5%) were non-adherent for CRC screening. Baseline data reported for the age-appropriate individuals in the sample include education and income levels, access to health care and insurance status, intent to be screened by colonoscopy, social influences of friends and family regarding CRC screening, and feelings, knowledge and beliefs regarding colonoscopy. These will be compared for screened versus unscreened participants. Discussion: The current baseline data contribute critical information about sociodemographics and cognitive and affective factors impacting CRC screening among two communities of African American men and women prior to participation in an educational intervention. Relation to Theme: The data presented in this abstract relate directly to the theme pertaining to cancer education delivered to diverse populations to reduce colorectal cancer disparities. Learning Objectives: 1. The participant shall be able to identify how sociodemographic factors such as age, gender, income and education impact CRC screening adherence. 2. The participant shall be able to identify specific cognitive (e.g., perceptions of benefits/barriers, risk) and affective (e.g., disgust, fear) factors that are associated with CRC screening among African American men and women. References: 1. Lansdorp-Vogelaar I, Kuntz KM, Knudsen AB, van Ballegooijen M, Zauber AG, Jemal A. Contribution of screening and survival differences to racial disparities in colorectal cancer rates. Cancer Epidemiol Biomarkers Prev. 2012; 21(5):728-736. 2. Morgan PD, Fogel J, Tyler ID, Jones JR. Culturally targeted educational intervention to increase colorectal health awareness among African Americans. J Health Care Poor Underserved. 2010; 21(3 Suppl):132-147. 3. McQueen A, Kreuter MW, Kalesan B, Alcaraz KI. Understanding narrative effects: The impact of breast cancer survivor stories on message processing, attitudes, and beliefs among African American women. Health Psychol. 2011; 30(6):674-682.

4C-5: Colon cancer knowledge, screening barriers, and information seeking among low-income middle- and older-age adults in the U.S. rural south

Su-I Hou¹, Jeff Springston^2
1University of Central Florida, College of Health and Public Affairs (COHPA), Orlando, FL, USA, ²University of Georgia, College of Journalism and Mass Communication, Athens, GA, USA

Abstract: Purpose: Colorectal cancer (CRC) screening among low-income adults warrants continued public health attention. This study assessed CRC knowledge, screening barriers, and information seeking among middle- and older-age adults in the south. Methods: A total of 245 people aged 40 years and above from selected rural, suburban, and small towns in Georgia participated. The study used a 5-item CRC knowledge test, a 16-item barrier, and 13-item CRC information seeking scales. Results: Over 76.3% of the participants aged over 50 years, and nearly 40% had household’s income of $35,000 or less. About 72.1% were females and 76.2% have had a colonoscopy. The means (SD) of CRC knowledge, screening barriers, and information seeking were 2.99 (1.159), 2.83 (.477) and 1.98 (.336), respectively. There were no significant differences of CRC knowledge by age, gender, or income. Those in their 50s, 60s, or 70s endorsed higher on “don’t need one current age” as a colonoscopy barrier comparing with those in their 40s (item means 2.88-3.07 vs. 2.39; pDiscussion: Data showed respondents had low CRC knowledge across all age, gender and income groups. Future interventions are recommended to focus on increasing the publics’ CRC knowledge, screening benefits, as well as reducing barriers. Study shows that individuals with lower perceived screening barriers are more likely to seek out more information, in turn, might be more likely to get a colonoscopy. Relation to Theme: This study relates to the conference theme of “diverse and medically underserved populations.” Study findings provide insights on developing tailored cancer education to address colon cancer knowledge, screening barriers, and encourage cancer information seeking among low-income middle- and older-age adults living in the rural south of the U.S. Learning Objectives: The participant shall be able to 1. Describe sample measurement items to assess colon cancer knowledge, screening barriers, and information seeking behaviors. 2. Discuss the relationships among colon cancer screening knowledge, barriers, information seeking, and colonoscopy behaviors. 3. Discuss implication of study findings on developing tailored cancer education interventions for middle- and older-age adults living in rural south to close the cancer disparity gap. References: 1. Rawl SM, Skinner CS, Perkins SM, Springston J, Wang HL, Russell KM, et al., (2012). Computer-delivered tailored intervention improves colon cancer screening knowledge and health beliefs of African-Americans. Health Education Research, 27(5), 868-885. 2. Yang Z, McComas K, Gay G, Leonard JP, Dannenberg AJ, and Dillon H. (2009). From information processing to behavioral intentions: Exploring cancer patients’ motivations for clinical trial enrollment. Patient Education and Counseling 79(1), 231-238.