4B-1: Identifying gaps in consumer health library collections: A retrospective review

Michelle Snow¹, Janet Papadakos¹, Katie McEwan², Aileen Trang³, Audrey Jusko Friedman^1
1Princess Margaret Cancer Centre, Toronto, Canada,² Ottawa University, Ottawa, Canada, ³Toronto General Hospital, ELLICSR Centre, Toronto, Canada

Abstract: Background/Purpose: Library collection development is done through soliciting feedback from clinical experts, getting recommendations from patrons, examining usage statistics, and monitoring demographic projections and trends. The traditional methods described above are generally effective at keeping collections relevant and current. Despite frequent and thorough collection development practices, gaps exist in the collection at the Patient & Family Library at the Princess Margaret Cancer Centre. These gaps become apparent when patrons request information that is not found in the collection or by custom search. The librarian documents all “search requests” (SRs) including the question and the yield. In order to identify gaps beyond traditional collection development practices, we undertook a retrospective review of SR records. Methods: 400 SR records from 2011– 2014 were analyzed. All records were entered into a matrix framework to prepare for analysis. The first level of analysis was thematic and meant to identify broad themes of requests. Once broad themes were identified, records were explored to determine how the request was fulfilled. We further interrogated SRs with predefined questions: the purpose of the request, if there was something about the request that was specific to the context, and whether the need for the information could have been better met in another way. Results/Findings: Preliminary analysis of 100 SR’s found the top 3 themes: side effect management, treatment information, and general information on a rare cancer. Of these 100 SR’s, 96 were fulfilled by using vetted websites, 2 by using special access to journal articles, and 2 by clinical experts in the domain of the query. Preliminary results also indicate that 20% of the requests were specific to the context. Discussion: Developing an understanding of why gaps exist in the collection will inform future collection development and resource development projects to meet the specialized needs of patients and families with cancer. Relation to Theme: This topic relates to the theme of the conference as it provides useful tools for Patient and Family Education Librarians to further enhance collection development and to inform resource development initiatives. Learning Objectives: The participant shall be able to determine how to identify gaps beyond traditional collection development practices and to evaluate their collection in order to inform future directions and resource development projects. References: 1. Chaputula A, Kanyundo A: Collection development policy: How its absence has affected collection development practices at Mzuzu University Library. Journal of Librarianship &Information Science 46: 317-325, 2014. 2. Stone G, Heyhoepullar B: The customer is always right? Assessing the value of patron-drive acquisition at the University of Huddersfield. Insighs: the UKSG journal 28: 22-31, 2015.

4B-2: Exploring the informational needs of patients and families living with brain metastases: A review of the literature

Janet Papadakos¹, Aman Sium¹, Aileen, Trang², Michelle Snow¹, Audrey Jusko Friedman¹, Caroline Chung^1
1Princess Margaret Cancer Centre, Toronto, Canada, ²Toronto General Hospital, ELLICSR Centre, Toronto, Canada

Abstract: Background: Brain metastases represent a pervasive threat to patients and families of all cancer types. Research suggests that an estimated 20-40% of all people living with cancer will develop brain metastases at some point in their cancer trajectory. The challenge of living with brain metastases is compounded by the breadth and complexity of health information that patients and family are forced to find, process, and use to inform life decisions. Since greater access and comprehension of information can help patients and families cope with disease and side effects, it is important that they have access to the information they need. The purpose of this literature review is to develop a comprehensive understanding of the unique informational and supportive care needs of patients and families living with brain metastases; and to inform the development of an education pathway that supports these needs. Methods: Two reviewers analyzed and synthesized three decades of literature on brain metastases from five electronic research databases with a focus on the informational needs of affected patient and families. Results: A comprehensive review of the literature exposed clear gaps in the current understanding of self-expressed informational need. The literature shows that patients and families are rarely consulted on their informational needs directly and there is a dearth of research to date that focuses on informational and supportive care needs of this population. Discussion: Results indicate an urgent need to focus research on the informational needs expressed by patients and families with brain metastases. Quality of life indicators, psychosocial supports, and resources related to death and dying are salient themes that surface in the literature however there is almost no commentary found that advocates for informational or supportive care responses to these issues. The findings of this review have informed a broader, mixed-method research study with patients and families. Relation to Theme: This presentation addresses the theme of “Cancer Education in Diverse Populations: Disparities, Genomics and Innovations”. Primarily, this presentation seeks to bridge disparities in cancer research by highlighting the health needs and concerns of an under-studied patient and family population. Learning Objectives: The participant shall be able to a) identify the core informational needs of patients and families living with metastatic brain cancer, and b) identify processes for building patient education resources that are grounded in patient experience, feedback, and informational needs. References: 1. Dorman, S et al. (2009). What do patients with brain metastases from non-small cell lung cancer want from their treatment? Palliative Medicine, 23(7):594-600. 2. Kitamura, C et al. (2011). Development and evaluation of a combined story and fact-based educational booklet for patients with multiple brain metastases and their caregivers. Palliative Medicine, 25(6):642-649.

4B-3: Incorporating Patient Navigation in a Randomized Control Trial That Provides Education to Newly Diagnosed Prostate Cancer Patients

Janelle Barrera Ikan, Said Adjao, Jennifer Damonte, Stephanie Avakian, Fabryann Tillman, Brian Rivers
H. Lee Moffitt Cancer Center, Tampa, FL, USA

Abstract: Background: The Patient Navigation Model (PNM) has been implemented to address key predictors of health, healthcare disparities, and alleviation of barriers encountered by patients on their health care continuum. Many studies have examined the role and training of Patient Navigators (PNs). However, their application in prostate cancer patients’ care remains unknown. This study incorporates PNs to facilitate education delivery to prostate cancer patients and caregivers and address their psychosocial context as dyads (patient and caregiver). Description: Recent studies suggest newly diagnosed prostate cancer patients with sufficient access to information on cancer care options continue to report unmet educational and psychosocial needs. In this randomized control trial, Dyads receive either the Personalized Health Information Navigator, an interactive psycho-educational intervention on iPad; or the Prostate Education Guide, a collection of NCI informational booklets. Additionally, the PNs provide navigation services and social support, meet in patients’ preferred location, and weekly assess whether the patient is experiencing any barriers (e.g., financial, communication, psychosocial, coordination or access to services) for 6-weeks. Evaluation: PNs collect data using a structured mixed research methods encounter log to systemically identify patients’ barriers and obtain feedback. The Patient Satisfaction with Navigator Scale (PSNS) is administered to patients after intervention to evaluate PNs’ impacts. Findings from the encounter log and the PSNS will be presented. Usefulness: Prostate cancer is unique due to its numerous treatment options with uncertain outcomes to other comparably high-incidence conditions. The PNM has been applied between the time of patients’ abnormal findings and the time of resolutions by diagnosis and treatment. The PNM has been recently expanded to include the timely movement of patients from treatment to survivorship. The PNM is an effective strategy to enhance the efficiency of healthcare systems. We aim to explore additional evidence on PNs’ impact on morbidity reduction specifically in prostate cancer. Relation to Theme: This study offers education for newly diagnosed prostate cancer patients. Its goal is to increase patient knowledge, alongside navigation services from the PN to help patients to connect the fragmented and complex health care system and to ensure a smooth continuum of care and enhancing the quality of life. Learning Objectives: 1. Participants will be able to identify predictors of prostate cancer patient’s satisfaction with patient navigators. 2. Participants will be able to describe the application of the core competencies of the PNM. 3. Participants will be able to identify the barriers that prostate cancer patients mostly encounter. 4. Participants will be able to identify the benefits of Patient Navigation. 5. Participants will be able to identify the navigation services and social support PNs administer. References: 1. Hendren, S., Griggs, J. J., Epstein, R. M., Humiston, S., Rousseau, S., Jean-Pierre, P., & Fiscella, K. (2010). Study protocol: a randomized controlled trial of patient navigation-activation to reduce cancer health disparities. BMC cancer, 10(1), 551. 2. Natale-Pereira, A., Enard, K. R., nevarez, L., & Jones, L. A. (2011). The role of patient navigators in eliminating health disparities. Cancer, 117(S15), 3541-3550. 3. Wells, K. J., Meade, C. D., Calcano, E., Lee, J. H., Rivers, D., & Roetzheim, R. G. (2011). Innovative approaches to reducing cancer health disparities. Journal of Cancer Education, 26(4), 649-657.

4B-4: Creating and Managing a Cancer Learning Resource Center: An updated resource of best practices

Jeff Yancey¹, Tabatha Ferrell², Lisa, Horton^3
1Huntsman Cancer Institute, Salt Lake City, UT, USA, ²University of Virginia Cancer Center, Charlottesville, Virginia, USA, ³Seattle Cancer Care Alliance, Seattle, WA, USA

Abstract: Background/Purpose: This presentation is to share updates to the “Creating and Managing a Cancer Learning Resource Center” manual developed by the Learning Resource Centers Committee of CPEN. The manual was released in 2006, updated and revised in 2010 and 2015. This document is a resource for institutions with or considering a learning resource center and offers “practical guidance for creating, organizing, and managing a cancer learning resource center.” The manual was created by learning resource center managers who recognized the need of this resource. This was identified through personal experience and in assisting other hospitals in creating learning resource centers for their patients. A complete update of the manual takes place every 5 years to reflect changes in the evidence surrounding patient education needs. Description: The manual provides information about the creation and administration of a cancer learning resource center including staffing, policy development, collection development and management, statistics and reporting, ethical considerations, promotion and marketing, program evaluations, and sample forms for patron management. Updates to the manual include considerations for developing electronic library collections, finding solutions for limited print materials, utilizing social media for promoting/marketing resource centers and developing the collection, and better incorporating health literacy principles into services. Evaluation: The development and update processes of the manual have been done by experienced learning resource center managers. Reviews from individuals who have used the manual to create or manage learning resource centers have been positive. Usefulness: The manual is specific enough to be useful, but general enough to allow for customization. It has been used throughout the North America to inform the creation of new centers and the management of established centers for nearly ten years. Although the manual was created with an oncology background, the principles inside can easily apply to develop consumer libraries in other disease groups. Relation to Theme: To help patients and families find empowering information, it must be delivered in a tailored and accessible way. This manual aids patient educators in serving their diverse populations with innovations in consumer library science. Learning Objectives: Objective 1: By the end of the presentation, participants will have access to a resource that stregthens their ability to provide cancer resources to diverse populations. Objective 2: By the end of the presentation, participants will be able to identify at least three ways the manual has been updated to serve changing needs. References: Crum, J.A. (2013). New activities and changing roles of health sciences librarians: a systematic review, 1990-2012. Journal of the Medical Library Association, 101(4), 268-277. doi: 10.3163/1536-5050.101.4.008. Papadakos, J., Trang, A., Wiljer, D., Cipolat, C., Cyr, A., Friedman, A. J., … Catton, P. (2014). What criteria do consumer health librarians use to develop library collections? A phenomenological study. Journal of the Medical Library Association, 102(2), 78-87. doi: 10.3163/1536-5050.102.2.003.

4B-5: Educate & Evaluate: The Right Information, at the Right Time, in the Right Way

Monika Duddy¹, Tory Cadotte¹, Tamara Harth², Heidi Amernic¹, Saurabh Ingale¹, Susan Boyko³, Zahra Ismail¹, Susanna Wong⁴, Massey Nematollahi⁵, Reena Tabing¹, Nazek Abdelmutti⁶, Patricia Pottie¹, Chris West^1
1Cancer Care Ontario, Toronto, Canada, ²Sunnybrook Odette Cancer Centre, Toronto, Canada, ³NECC, Sudbury, Canada, ⁴Royal Victoria Regional Health Centre, Barrie, Toronto, ⁵Stronach Regional Cancer Centre, Newmarket, Canada, ⁶Princess Margaret Cancer Centre, Toronto, Canada

Abstract: Background/Purpose: While readability formulas are critical and widely used to evaluate the reading difficulty of educational material, they ignore other factors known to impact one’s ability to comprehend the information provided. The Patient Education Material Assessment Tool (PEMAT) was developed by the Agency for Healthcare Research and Quality (AHRQ) in 2013 to assess components of understandability and actionability not covered by readability formulas. However, little is known about the use of the tool in clinical settings. To that end, this presentation describes one institution’s experience using the PEMAT. Description: The PEMAT was used to evaluate 78 educational resources (61 print and 17 audiovisual) disseminated through the Patient & Caregiver Education Department of an NCI-Designated Comprehensive Cancer Center. Drawing from a sample of 17 raters, two raters assessed each of the resources using the PEMAT. The percent agreement between each pair of raters for each item on the PEMAT was calculated. In addition, readability assessments were calculated on each text-based resource using two commonly used reading level assessments. Raters’ experience using the PEMAT was solicited and compiled. Evaluation: Average understandability and actionability scores were calculated at 87.63 and 95.56, respectively. Percent agreement between each pair of raters per item ranged from 50% to 100%. Ninety-two percent of raters agreed that the PEMAT was easy to use, however qualitative feedback from raters suggested areas for clarification. Average readability scores were calculated using the Flesch-Kincaid Reading Ease (68.56) and the SMOG Index (7.28). Usefulness: The PEMAT is a useful supplement to reading level alone in the assessment of educational materials. Feedback generated by this project is expected to improve the clarity of instructions, ultimately improving inter-rater reliability. Further use of the PEMAT by a wide array of users is necessary to best understand how the tool can be used to contribute to continuous improvement of the tool.Relation to Theme: The PEMAT is a tool that can be used to assess patient education materials to ensure their appropriateness for diverse populations. The tool augments traditional assessments (e.g. readability formulas), and is innovative in its role in assessing multimedia materials. Learning Objectives: The participant shall be able to evaluate the appropriateness of using the PEMAT as a component of the evaluation of patient education materials within their healthcare setting. References: 1. Shoemaker, S.J., Wolf, M.S., and Brach, C. (2014). Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Education and Counseling, 96, 395-403. 2. Finnie, R. K. C., Felder, T. M., Linder, S. K., and Mullen, P. D. (2010). Beyond Reading Level: A Systematic Review of the Suitability of Cancer Education Print and Web-based Materials. Journal of Cancer Education, 25, 497-505.