1C-1: Leveraging Resources and Partnerships to Produce Survivorship Videos

Theresa Hoenemeyer¹, Gavin Graf², Elizabeth Townsend^3
1UAB Comprehensive Cancer Center, Birmingham, AL, USA; ²Alabama Department of Public Health (Cancer Prevention Division), Montgomery, AL, USA; ³Department of Health and Human Services Maine Center for Disease Control and Prevention, Augusta, ME, USA

Abstract: Background/Purpose: Disseminating evidence-based information to prevent health disparities among cancer survivors living in rural Alabama is a major challenge. To address this, the Alabama Comprehensive Cancer Control Coalition (ACCCC) collaborated with the University of Alabama at Birmingham Comprehensive Cancer Center (UAB CCC), to create survivorship videos addressing the medical, functional, and psychosocial aspects of cancer survivorship. Expert interviews with UAB CCC oncologists and vignettes of provider–patient encounters were utilized to present health information videos to viewers with a range of health literacy skills. Description: Important topics and evidence-based scripts were identified by oncology experts and cancer survivors through the UAB CCC and ACCCC. Four to five primary learning objectives were prioritized as main talking points for each video script. In the scripts, patient–provider encounters modeled how survivors can talk to their healthcare provider. The ACCCC worked with the Alabama Department of Public Health (ADPH) to identify suitable individuals to portray cancer patients, develop stage sets, and handle video production. Prior to video release, the UAB CCC solicited feedback on the videos utilizing surveys distributed to cancer survivors and oncology care providers.  Evaluation: Sixteen videos were produced and are available on YouTube. A link to the film library was distributed using existing community health center networks and UAB’s cancer care network. DVDs and other video media were made available to healthcare providers for distribution to cancer survivors. Survey results indicate the videos are easy to understand, relatable, and valued. Participants suggested future topics address the fear of recurrence, symptom management, career/ employment issues, and financial and health insurance needs. Usefulness: In areas where health resources and access to care are limited, online videos modeling patient–provider interactions are an effective way to communicate health information to viewers with a range of health literacy skills. Learning Objectives: The participant will be able to identify topics which are important to cancer survivors. The participant will learn how to maximize health collaborations and resources in areas where access to care and funding are limited. The participant will be able to develop learning objectives and scripts that use modeling of patient–provider interactions. The participant will learn an effective way to communicate health information to viewers with a range of health literacy skills. References: Agency for Healthcare Research and Quality (AHRQ) (2013). Communication and Dissemination Strategies to Facilitate the Use of Health-Related Evidence. AHRQ Pub. No. 13(14)-E003-1-EF November 2013. Accessed from: http://effectivehealthcare.ahrq. gov/index.cfm/search-for-guides-reviews-and-reports/?pageaction= displayproduct&productid=1756. Tabak RG, Khoong EC, Chambers DA, et al. Bridging research and practice: models for dissemination and implementation research. Am J Prev Med. 2012 Sep;43(3):337-50. PMID: 2289812

1C-2: Caregiver Participation in a Psychoeducational Cancer Support Program: Results from a National Sample

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

Abstract: Background/Purpose: Cancer caregivers often face significant informational and support needs. There may be challenges reaching the caregivers in providing them this information and support. The Cancer Support Community (CSC) sought to investigate how participating in a psychoeducational workshop designed for both patients and caregivers met the needs of caregivers and caregiver response to the program. Methods: One thousand six hundred eighty-eight adults attending one of ten of (CSC)’s Frankly Speaking About Cancer (FSAC) psychoeducational workshops nationwide from 2009 to 2015 completed a questionnaire postworkshop. Caregivers (2,892) of cancer patients who attended these psychoeducational workshops reported workshop-specific outcomes, including knowledge and workshop satisfaction, in addition to background characteristics (75 % response rate). Twenty-five percent of respondents were caregivers; the remainder was cancer patients (59.8 %), medical professionals (10.5 %), or other attendees (4.7 %). The present analyses focus on cancer caregivers. Results/Conclusions: Caregivers were Caucasian (81.0 %), female (63.9 %), and averaged 58.2 years old (s.d. = 13.8). Nearly half (46.7 %) became cancer caregivers within the past year. Some 73.7 % strongly identify as caregivers and 61.2 % are strongly involved in coordinating the patient’s care (rated a “4” or “5” on a 5-point scale for both). Thirty percent are currently in a face-to-face support group, and 61.2 % reported that this was their first psychoeducational workshop. Some 11.2 % reported not having a source for emotional support to cope with cancer. The workshop was well-received, with 96.3 % recommending the workshop to others facing similar issues. Caregivers reported a significant increase in content-specific knowledge post-workshop (F = 142.3, p = <.01). Some 89.2 % reported increased confidence about discussing treatment options with the healthcare team after the workshop. Discussion: Results suggest that comprehensive information and supportive services are highly relevant in meeting the psychosocial needs of cancer caregivers. Increased understanding of informational and emotional support service utilization can inform provision of services and programs addressing the emotional and informational needs of caregivers. Learning Objectives: The participant shall be able to identify characteristics of cancer caregivers who have elected to attend a cancer psychoeducational workshop. The participant will be able to describe at least two benefits to participating in a psychoeducational program for cancer caregivers. References: National Alliance for Caregiving. (2015). Caregiving in the U.S.: Executive Summary. http://www.caregiving.org/caregiving2015/.  Lund, L., Ross, L., Petersen, M.A., & Groenvold, M. (2014). Cancer caregiving tasks and consequences and their associations with caregiver status and the caregiver’s relationship to the patient: a survey. BMC Cancer, 14, 541. doi:10.1186/1471-2407-14-541, date of access: April 8, 2016 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4122762/. Sklenarova, H., Krümpelmann, A., Haun, M. W., et.al. (2015), When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer, 121: 1513–1519. doi:10.1002/cncr.29223 http://www.healio. com/hematology-oncology/practice-management/news/online/%7B1f5d1 dab-3f5b-4c43-95d0-daea8ef32eaf%7D/caregivers-of-patients-with-canceroften-have-unmet-support-needs. 

1C-3: Response to Psychoeducational Programs in Long-Term Cancer Survivors: Results From a National Sample

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

Abstract: Background/Purpose: Long-term cancer survivors (defined as diagnosed 2+ years ago) often report significant psychosocial and informational needs, even years after treatment has ended. Because a significant segment of individuals attending psychoeducational workshops through the Cancer Support Community (CSC) are long-term survivors, the CSC sought to better understand the utility of participating in a psychoeducational workshop for this population and to evaluate how the program has met their needs. Methods: Between 2009 and 2015, 11,688 individuals attending a Frankly Speaking About Cancer (FSAC) psychoeducational workshop at CSC affiliates nationwide completed post-workshop evaluations (75 % response rate). Attendees reported workshop-specific outcomes, including knowledge and workshop satisfaction, in addition to background characteristics. In all, 6916 attendees were diagnosed with cancer; of those, 36.4 % were diagnosed within the past year, 23.8 % between 2 and 5 years ago, and 22.7 % 5+ years ago. The current analyses focused on attendees diagnosed at least 2 years ago (n = 2401; 46.5 % of survivors). Results/Findings: Attendees were Caucasian (79.6 %), female (76.8 %), and averaged 62.3 years old (s.d. = 10.3). Among long-term survivors, this was the first psychoeducational workshop for 36.6 %, and 52.6 % currently are in support groups. Many have experienced depression (38.8 %) or anxiety (43 %) as a result of their cancer. Long-term survivors reported a significant increase in content-specific knowledge post-workshop (F = 127.3, p = <.01). Some 86.1 % reported increased confidence about discussing treatment options with their healthcare team after the workshop, and 65.9 % plan to discuss clinical trial options. Notably, 38 % of long-term survivors endorsed “connecting with others undergoing similar issues” as an important aspect of attending the workshop. Some 93.5 % recommend the workshop to others facing similar issues. Discussion: Results support the workshop meeting both informational and supportive needs of long-term survivors. Results suggest that even years later, comprehensive information and supportive services are highly relevant in meeting the psychosocial needs of cancer survivors. Learning Objectives: The participant shall be able to identify common informational and supportive needs of cancer survivors who are at least 2 years from diagnosis and who have elected to attend a cancer psychoeducational workshop. The participant will better understand support utilization patterns in this population. References: http://cebp.aacrjournals.org/content/22/4/561.short. http://www.bloomberg.com/news/articles/2013-06-04/cancer-no-longerdeath-sentence-brings-care-gap-health. Katharine Hodgkinson, Phyllis Butow, Glenn E Hunt, Susan Pendlebury, Kim M Hobbs, Gerard Wain. Breast cancer survivors’ supportive care needs 2–10 years after diagnosis. Supportive Care in Cancer Volume 15, Issue 5, pp 515-523. Erin E. Kent, Neeraj K. Arora, Julia H. Rowland, Keith M. Bellizzi, Laura P. Forsythe, Ann S. Hamilton, Ingrid Oakley-Girvan, Ellen B. Beckjord, Noreen M. Aziz (2012). Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Education and Counseling. Volume 89, Issue 2. Pages 345-352. doi:10.1016/j. pec.2012.08.014 

1C-4: Peer Connect: an Innovative Approach to Meeting the Educational and Emotional Needs of Hematopoietic Cell Transplant (HCT) Patients and Caregivers

Katie Schoeppner, Heather Moore, Jackie Foster, Katy Engelby, Elizabeth Murphy
National Marrow Donor Program/Be The Match, Minneapolis, MN, USA

Abstract: Background/Purpose: HCT is a complex process that typically requires extended hospitalizations, intensive outpatient recovery, and a fulltime caregiver. Survivors often experience physical and emotional distress for years following transplant (Rini et al., 2014). There is a steep learning curve during HCT and survivors report that talking with other transplant recipients is an important supplement to education by medical professionals (Jim et al., 2014). A national HCT peer support program was implemented to (1) provide participants (HCT patients/caregivers who request peer contact) with information, support, and coping strategies through conversations with peer volunteers (HCT recipients/caregivers) and (2) foster ongoing support for peer volunteers. Description: Peer Connect is designed to meet educational and support needs of patients/caregivers throughout HCT. A clinical social worker trains volunteers to handle difficult conversations, maintain boundaries, and respect confidentiality and offers a supportive community through group teleconferences. Participants are matched to volunteers based on demographics and communicate via telephone or email. Evaluation: A 21-item, cross-sectional program evaluation is administered to participants after the initial conversation. An evaluation is sent to volunteers annually. Since 2012, 484 participants have been connected. Sixty-one recipients and 18 caregiver peer volunteers are currently active. Among participants and volunteers last year, the evaluation yielded a 44 and 92 % response, respectively. Ninety-six percent of participants and 100 % of volunteers rated the program positively, overall. Eighty-eight percent of participants indicated that the program was helpful in improving understanding of the transplant process and 100% of volunteers found the program rewarding. Usefulness: Benefits of peer support are well documented (1, 2). The success of Peer Connect may be credited to thorough training and ongoing support for peer volunteers, resulting in high satisfaction rates. This innovative program model meets the needs of participants and gives volunteers the opportunity to make meaning of their HCT experience. The Peer Connect program can be tailored and applied globally for other patient populations. Learning Objectives: At the end of this session, the participant shall be able to (1) describe the characteristics of the HCT peer program model, (2) compare and contrast the benefits of peer support with more traditional models of psychoeducational interventions with HCT patients and caregivers, and (3) outline factors that contribute to an effective volunteer program for patients and caregivers providing peer education and support. References: Rini, C., Austin, J., Wu, L.M., Winkel, G., Valdimarsdottir, H., Stanton, A.L., Isola., L., Rowley, S., & Redd, W.H. (2014).Harnessing benefits of helping others: A randomized controlled trial testing expressive helping to address survivorship problems after hematopoietic stem cell transplant. Health Psychology, 33, 1541-1551. Jim, H.S.L., Quinn, G.P., Gwede, C.K., Barata, A., Cessna, J., Christie, J., Gonzalez, L., Koskan, A., & Pidala, J.(2014). Patient education in allogeneic hematopoietic cell transplant: What patients wish they had known about quality of life. Bone Marrow Transplantation, 49, 299-303. 

1C-5: Feasibility and Acceptability of a Web-Based Patient Education Curriculum for Cancer Survivors, Developed by Cancer Survivors from a Patient Engagement Event

Adam McDowall¹, Lynn Gauthier², Beth Edwards³, Cherly Pritlove³, Nazek Abdelmutti⁴, Janet Papadakos³, Tina Papadakos^3
1University of Toronto, Toronto, ON, Canada; ²Université Laval, Quebec, QC, Canada; ³Princess Margaret Cancer Centre, University of Toronto, Toronto, ON, Canada; ⁴University Health Network, Toronto, ON, Canada

Abstract: Background/Purpose: Many cancer survivors report being ill prepared to make treatment decisions and manage side effects and psychosocial needs. Given the benefits of peer support for cancer survivors, a patient engagement event was held to harness the intellectual capital of survivors and share the challenges and success they faced in eight key areas that survivors themselves deemed crucial to the cancer journey. The data collected informed the content of a web-based toolkit for cancer survivors that highlight these key areas of care. We evaluated the content of this toolkit to determine the feasibility of developing meaningful curricula from a patient engagement event and the acceptability of its content to cancer survivors. Methods/Description: Using a mixed-methods approach, we evaluated feasibility with validated tools, using the Patient Education Materials Assessment Tool (PEMAT) and the Simple Measure of Gobbledygook (SMOG) readability tools as quality indicators. Acceptability was assessed with in-person interviews including a think aloud approach to scenario exercises, observation, and open-ended questions. Results/Findings or Evaluation: Curricula quality is high (mean PEMAT score for the toolkit is at about 80 % (79.97 %, range 68.4–87.4), and the mean SMOG readability score is 9.15. Findings from the qualitative interviews suggest that participants like that the toolkit was created by survivors and said they had “More confidence in the resources” and “There’s realism about the information, generated through actual experience.” Participants were satisfied with the breadth of material and appreciated the emphasis on psychosocial aspects of their well-being, one participant called it a “one-stop shop” for all of their information and resource needs. Discussion/Usefulness: This study confirms the feasibility of developing meaningful curricula from a patient engagement event and the acceptability of the content. Learning Objectives: The participant shall be able to describe a patient engagement initiative, apply the concept of co-creation to their work, and review research results toward evaluating the feasibility and acceptability of patient education co-created with patients and caregivers. References: doi:10.1177/0162243904271724ScienceTechnology HumanValues Spring 2005 vol. 30 no.  2 251-290 doi: 10.1377 /hlthaff.2012.1074 HEALTH AFFAIRS 32, NO. 2 (2013): 321–327.