4A-1: Patterns and Correlates of Baseline Cancer Worry Among Racially and Ethnically Diverse, Medically Underserved Patients in Community Clinics: an Examination of Three Types of Cancer Worry

Shannon M. Christy¹, Alyssa Schmidt², Hsiao-Lan Wang³, Steven K. Sutton¹, Stacy N. Davis¹, Enmanuel Chavarria¹, Rania Abdulla¹, Gwendolyn Quinn¹, Susan T. Vadaparampil¹, Chitra Ravindra⁴, Ida Schultz⁵, Richard Roetzheim¹, David Shibata⁶, Cathy Meade¹, Clement Gwede^1
1Moffitt Cancer Center, Tampa, FL, USA; ²University of South Florida, Tampa, FL, USA; ³College of Nursing, University of South Florida, Tampa, FL, USA; ⁴Florida Department of Health in Pinellas County, St. Petersburg, FL, USA; ⁵Premier Community HealthCare, Dade City, FL, USA; ⁶University of Tennessee Health Science Center, Memphis, TN, USA

Abstract: Background/Purpose: Cancer worry may influence colorectal cancer (CRC) screening intentions and behavior (Bynum et al., 2012; Robinson et al., 2011). Understanding correlates of the different types of cancer worry may contribute new perspectives for addressing CRC screening disparities. The current study sought to (1) understand the prevalence of general cancer worry, CRC-specific worry, and worry about CRC test results and (2) identify sociodemographic and health-related predictors for each type of cancer worry. Methods: Participants (N = 416) were aged 50–75, at average CRC risk, non-adherent to CRC screening guidelines, and enrolled in a randomized controlled trial to increase CRC screening that was conducted at community clinics. Participants completed a baseline questionnaire that included sociodemographics, health-related beliefs (e.g., Preventive Health Model constructs) and healthcare experiences, and three cancer worry measures. Measures of cancer worry were dichotomized as “sometimes”/“often”/“all of the time” versus “never or rarely” for general cancer worry and CRC-specific worry and scores of ≥7 (range 2–10) for worry about CRC test results. Sociodemographic and health-related variables associated with cancer worry in univariate logistic regression (p < .05) were included in multivariable models. Results/Findings: Forty-seven percent of participants reported experiencing high levels of general cancer worry. Twenty-three percent reported high levels of CRC-specific worry. Thirty-five percent reported high levels of worry about CRC test results. Predictors of general cancer worry included perceived susceptibility (p < .01), social influence (p = .02), and salience and coherence (whether CRC screening makes sense/is important; p = .04). Perceived susceptibility (p < .01) and social influence (p = .01) were significant predictors of CRC-specific worry. Perceived susceptibility (p < .01) and marital status (p = .02) were significant predictors of worry about CRC test results. Discussion: Perceived susceptibility was a consistent predictor across the three types of cancer worry, whereas other predictors varied between cancer worry types and in magnitude of association. Findings have implications for future research, education, and practice as cancer worry may be modifiable through interventions. Learning Objectives: The participant shall be able to (1) define and recognize multiple types of cancer worry which may differentially influence cancer screening behavior and (2) describe how levels of cancer worry and sociodemographic, healthcare experience, and health-related belief predictors may vary depending upon type of cancer worry measured among racially/ethnically diverse, medically-underserved patients. References: 1. Bynum SA, Davis JL, Green BL, Katz RV. Unwillingness to participate in colorectal cancer screening: examining fears, attitudes, and medical mistrust in an ethnically diverse sample of adults 50 years and older. Am. J. Health Promot. 2012;26(5):295-300. 2. Robinson CM, Cassells AN, Greene MA, Beach ML, Tobin JN, Dietrich AJ. Barriers to colorectal cancer screening among publicly insured urban women: no knowledge of tests and no clinician recommendation. J. Natl. Med. Assoc. 2011;103(8):746-753.

4A-2: Meeting the Educational Needs of Older Adults with Cancer: Results from a National Sample of Program Attendees

Rhea Suarez, Marni Amsellem; presented by Claire Saxton
Cancer Support Community, Washington, DC, USA

Abstract: Background/Purpose: Adults age 65+ facing cancer often have significant informational and psychoeducational needs. One way in which they can have some of their needs met is to attend a psychoeducational workshop. The extent to which older adults benefit from these workshops, relative to all attendees, has received little attention. The Cancer Support Community (CSC) sought to better understand how older adults diagnosed with cancer benefit from attending psychoeducational workshops. Methods: Between 2010 and 2015, 10,492 individuals attending in-person Frankly Speaking About Cancer (FSAC) psychoeducational workshops nationwide completed post-workshop evaluations (75 % response rate). Attendees reported a variety of workshop outcomes, including knowledge, comfort discussing workshop content with their healthcare team, and overall workshop satisfaction. The current analyses highlight attendees with cancer aged 65 or older (n = 2178). Results/Findings: Attendees were Caucasian (79.6 %), female (76.8 %), and averaged 57.9 years old (s.d. = 13.4). Post-workshop knowledge among older adults was significantly higher than pre-workshop knowledge (F = 198.2, p < .01; m = 4.2 and m = 2.9, respectively). Overall, 95.4 % of older adults would recommend the workshop to others affected by cancer. After attending the workshop, many gains were reported by older adults with cancer: 87.6 % felt more confident in speaking with their doctor about treatment options, 88.2 % reported increased knowledge about treatment options, 88.6 % feel more comfortable speaking about treatment side effects, and 67.4 % plan to discuss clinical trials with their healthcare team to see whether they would be an appropriate treatment option for them. Discussion: Results indicate that older adults with cancer report significant benefits from attending a psychoeducational workshop. Results from this sample of workshop attendees are encouraging, based on previous research demonstrating the unmet psychoeducational and support needs of older adults with cancer. Learning Objectives: After being presented with this research, the participant shall be able to characterize how psychoeducational programs are meeting the informational and support needs of older adults with cancer. The participant should be able to make comparisons between older adults and younger adults in terms of meeting psychoeducational program outcomes. References: http://nursing. advanceweb.com/Article/Patient-Education-Teaching-Older-Adults.aspx. http://www.redfame.com/journal/index.php/jets/article/view/38. http://link.springer.com/article/ doi:10.1007/s00520-012-1450-7. 

4A-3: Identifying the Informational and Supportive Care Needs of Homeless People With Cancer: a Scoping Literature Review

Karen Lawrie¹, Christina Ransom², Sayo Falade¹, Janet Papadakos^1
1Princess Margaret Cancer Centre, Toronto, ON, Canada; ²University of Toronto, Faculty of Information, Toronto, ON, Canada

Abstract: Background: Research suggests that homelessness exacerbates cancer risk behaviors including increased alcohol consumption, drug use, tobacco use, obesity, and prolonged sun exposure. As such, the rate of cancer in homeless people is twice that of the general population. This is compounded by the difficulty that homeless people have with navigating health systems, scheduling appointments, and complying with medical treatment. Despite the breadth of these challenges, few patient education resources are tailored to the needs of this population. Purpose: The aim of this literature review is to develop an understanding of the informational and supportive care needs of the homeless population. Results will be used to inform future resource development projects to meet the specialized needs of this population. Methods: A systematic search was conducted in ten databases. The following terms were used to generate the search: “cancer,” “homeless,” “homelessness,” “indigent,” “neoplasm(s),” “schizophrenia,” and “mental illness.” Duplicate screening was conducted. Full text files were obtained for articles deemed eligible for this review using predetermined criteria. Results/Findings: The literature review shows that current research is primarily focused on cancer prevention strategies for the homeless. Despite the numbers of homeless people with cancer, no studies were found that explored the informational or supportive care needs of the homeless within the cancer system. Discussion: As a high-risk, hard-to reach population, the homeless pose complex challenges to the cancer system. Results indicate an urgent need to identify the informational and supportive needs of homeless patients who enter the cancer system. This includes the need to identify the unique challenges faced by the homeless that may limit their ability to comply with a plan of care and adapt educational material as necessary to better meet the needs of this population. Learning Objectives: The participant shall be able to (a) identify some core issues faced by homeless people in the cancer system and (b) identify processes for building patient education resources that are grounded in patient experience, feedback, and informational needs, and (c) determine future community partnerships. References: Asgary, R., Sckell, B., Alcabes, A., Naderi, R., & Ogedegbe, G. (2015). Perspectives of cancer and cancer screening among homeless adults of New York City shelter-based clinics: a qualitative approach. Cancer Causes & Control, 26(10), 1429–1438. doi:10.1007 /s10552-015-0634-0. Muirhead, L. (2014). Cancer Risk Factors Among Adults with Serious Mental Illness. American Journal of Preventive Medicine, 46 (3), S98–S103.

4A-4: Patient Navigation Education for Community Health Representatives in Tribal Communities

Mary Koithan¹, Agnes Attakai^2
1University of Arizona College of Nursing, Tucson, AZ, USA; ²University of Arizona, College of Public Health, Tucson, AZ, USA

Abstract: Background: In Native American populations, cancer care disparities are multi-focal arising from reduced health literacy and access to services as well as cultural values and beliefs that delay and impede treatment. Patient navigation provided by community health representatives (CHRs) is one way to address these barriers and improve cancer care equity. Methods: This presentation will describe development, content, and evaluation of a two-part CHR navigation curriculum. The Tribal Patient Navigation Program (part 1) was developed through key informant interviews to deliver a 2-day (16 h) interactive curriculum focused on (a) roles/responsibilities of CHR navigators, (b) advanced communication, (c) traditional healing, and (d) cultural sensitivity. Part II, tailored to match CHR roles/responsibilities and the needs of an individual AI community, delivers eight additional modules focused on (a) basics of cancer pathophysiology, (b) cancer prevention, (c) diagnosis and treatment, (d) symptom management, (e) survivorship, and (f) end-of-life care. Part 2 is tailored to within which the program is delivered. Evaluation and Conclusions: To date, part 1 has been delivered to 90 participants representing 12 tribes in Arizona. Surveys indicate that 73 % of the participants strongly agree that the training “addressed a gap in knowledge of skills” and 76 % could competently apply the knowledge gained as a result of the activity.” Part 2 curriculum has been tested with 12 participants representing 1 tribe with patient/family surveys indicating that the most valuable CHR/navigation services are social and emotional support, education about cancer care treatments, and brokering of community/healthcare services. Patient/family interviews indicate overall satisfaction with the care provided by CHRs who attended the expanded program, one stating “I would not be here today without the care and help my navigator provided.” These programs can be delivered using a train-the-trainer model. Additionally, online interactive, casebased training modules are being developed to extend program dissemination efforts. Learning Objectives: The participant will be able to (1) identify five essential components of a AI patient navigation program and (2) describe how the educational program can be tailored to individual tribal community needs and practice patterns. References: Burhansstipanov, L. Harjo, L. Krebs, L. Marshall A. Lindstrom. D. (2015). Cultural roles of native patient navigators for American Indian cancer patients. Frontiers in Oncology. 5, 79. Harjo, L. Burhansstipanov, L. & Lindstrom, D. (2014). Rationale for “cultural” native patient navigators in Indian country. Journal of Cancer Education, 29(3), 414–419.

4A-5: Information Preferences of Older Adults Learning About Hematopoietic Cell Transplantation (HCT)

Jackie Foster¹, Mukta Arora², Linda Burns¹, Ellen Denzen¹, Brett Glotzbecker³, Shirley Johnson⁴, Hannah MacDougall², Lih-Wen Mau¹, Elizabeth Murphy¹, Stacy Stickney Ferguson¹, Celalettin Ustun², Heather Moore^1
1National Marrow Donor Program/Be The Match, Minneapolis, MN, USA; ²University of Minnesota, Minneapolis, MN, USA; ³Dana-Farber Cancer Institute, Boston, MA, USA; ⁴City of Hope, Duarte, CA, USA

Abstract: Background/Purpose: Hematopoietic cell transplantation (HCT) is a complex treatment option for patients with hematologic malignancies, such as leukemia. In 2013, nearly 3000 US HCT patients were 65 years of age or older (65+) at time of transplant (Pasquini & Zhu, 2015). There are distinctions in how patients 65+ learn and make treatment decisions (Posma et al., 2009; Randall et al., 2015). While intellection is not affected by age, sensory abilities may decline so education resources should use larger fonts and clear audio (Posma et al., 2009; Randall et al., 2015). Also, medical decision-making preferences change with age, coinciding with many socioeconomic and functional changes (Posma et al., 2009; Randall et al., 2015). Patients 65+ may involve adult children with treatment decisions. To better understand the information needs, learning, and decision-making preferences of HCT patients 65+ and their primary caregivers, the National Marrow Donor Program® (NMDP)/Be The Match® conducted a comprehensive needs assessment in partnership with three network transplant centers (TCs). Methods: Focus groups for 65+ allogeneic and autologous HCT patients and their caregivers are underway via three US TCs. Focus groups are offered in person and by phone. The 1-h semi-structured discussions are recorded and transcribed verbatim. Analysis will be conducted and result in conceptual themes. Results/ Findings: Two telephone and three in-person focus groups are complete. Participants included patients (n = 18) and caregivers (n = 6). Preliminary themes include (1) feeling inundated with information when learning about HCT, (2) need for tailored resources with age-specific recovery expectations, and (3) benefit of peer support. Focus group results, including demographic and socioeconomic variables of participants, will be presented as well as practice implications for patient educators. Discussion: Effective patient education supports learning and engagement in the treatment decision-making process. As HCT increasingly becomes a treatment option for patients 65+, tailored educational resources are needed. The focus group results will inform and guide the development of new educational resources for patients 65+ with hematologic malignancies considering and planning for HCT. Learning Objectives: At the end of this session, participants will be able to describe findings about HCT information needs and treatment decision-making preferences for patients 65+ and their caregivers, discuss strengths and limitations of focus groups to identify patient education needs, and apply focus group results to tailored educational program design. References: Pasquini MC, Zhu X. Current uses and outcomes of hematopoietic stem cell transplantation: CIBMTR Summary Slides, 2015. Available at: http://www.cibmtr.org. Posma, E.R.; van Weert, J.C.; Jansen, J; Bensing, J.M. (2009). Older cancer patients’ information and support needs surrounding treatment: An evaluation through the eyes of patients, relatives and professionals. BioMedCentral Nursing, 8:1. Randall. J., Keven, K., Atli, T. & Ustun, C. (2015). Process of allogeneic hematopoietic cell transplantation decision making for older adults. Bone Marrow Transplantation. Advance online publication. doi: 10.1038/bmt.2015.241 

3A-1: Incorporating the Patient’s Voice to Enhance Oncology Education: Connecting the Roles of Patient and Educator and Engaging Patients in Activity Development

Karen Overstreet¹, Monique Johnson^2
1Imedex, Raleigh, NC, USA; ²Imedex, Alpharetta, GA, USA

Abstract: Background: Improving patient care and health outcomes should be at the heart of all continuing education (CE), regardless of whether an individual activity is designed to attain that level of educational outcomes. After all, at one time or another, virtually all of us are patients or caregivers. The majority of CE activities include only clinicians as faculty. However, patients can play and important and impactful role in shaping education aimed at improving the quality of care. Description: This session will include insights regarding how working in CE impacts educators’ experience as cancer patients and caregivers, how experience as a patient can shape the planning of CE, and how the connections among these experiences can translate to effective education. This session will also include brief case studies from live and online CE activities for oncology physicians and nurses that incorporate video of survivors and patients with cancer. In the videos, the patients and survivors discussed the opportunities and challenges they faced while interacting with members of their care team in making their treatment decisions. Evaluation: The patients and survivors who allowed educators to videotape their stories reported being empowered by contributing to education for clinicians. Several of them were so moved by the experience that they became patient navigators. The videos were the mostviewed and most-downloaded component of several online CE activities. Participant satisfaction with all activities that included the patient videos was very high, and the educational activities resulted in improvements in learners’ knowledge and competence. Usefulness: All CE providers should consider the patient perspectives when planning education. Planners of CE should consider how to incorporate patients into the planning—and even the delivery—of education. Educators should reflect on how our work can facilitate our experience as patients (and caregivers) and vice versa to enrich the educational planning process. Learning Objectives: After this session, participants should be better able to relate experience as a patient or caregiver to the planning of educational activities and assess the impact of incorporating the patient’s voice in the planning of CE activities for oncology clinicians. References: National Learning Competencies. Alliance for Continuing Education in the Health Professions. http://www.acehp.org/p/cm/ld/fid=15. Accessed March 8, 2016. Von Roenn JH. Critically Ill Patients’ Preferences Regarding Aggressive Medical Interventions: Can We Hear the Patient’s Voice? http://oncology.jamanetwork.com/article.aspx?articleid=2457393. Accessed March 8, 2016. Hall LK, et al. The Cancer Experience Map: An Approach to Including the Patient Voice in Supportive Care Solutions. http://www.jmir.org/2015/5/e132/. Accessed March 8, 2016. Hirsch BR. Incorporating the Patient’s Voice in the Continuum of Care. http://www. jnccn.org/content/11/1/116.short. Accessed March 8, 2016.