Janet Papadakos

Informational needs of gynecologic cancer survivors.

OBJECTIVES In preparation for the launch of a gynecologic oncology survivorship program, this study looked at the informational needs of women with gynecologic cancers. Although studies have touched on some of these needs, no published literature has investigated the comprehensive informational needs of gynecologic oncology patients within all sites of gynecologic cancers. METHODS A needs assessment, consisting of a self-administered questionnaire, was conducted at an ambulatory gynecologic oncology clinic from August 2010 to March 2011. This study investigated the informational needs of patients, including the importance of information, the amount desired, and the preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social, and spiritual. RESULTS 185 surveys were analyzed and the majority of the respondents were Caucasian (77%) and over the age of 50 (66%). Forty-nine percent of respondents were diagnosed with ovarian cancer, and there was an even distribution between newly diagnosed patients (38%), those in long-term follow-up (27%), and those with recurrent disease (37%). Overall, respondents placed more importance on receiving medical information (P<0.01). The three preferred education modalities were; pamphlets, one-on-one discussions with health care professionals and websites. Age, education, and disease site were associated with differing informational needs. CONCLUSIONS This study has highlighted the most important informational needs of patients with gynecologic malignancies in our patient population. This information may guide the development of clinical survivorship programs and educational resources for patients in the future.

Reimagining care for adolescent and young adult cancer programs: Moving with the times.

Literature regarding the development of adolescent and young adult (AYA) cancer programs has been dominantly informed by pediatric centers and practitioners. However, the majority of young adults are seen and treated at adult cancer centers, in which cancer volumes afford the development of innovative supportive care services. Although the supportive care services in adult cancer centers are helpful to AYAs, some of the most prominent and distinct issues faced by AYAs are not adequately addressed through these services alone. This article describes how the AYA Program at Princess Margaret Cancer Centre has collaborated with existing supportive care services in addition to supplying its own unique services to meet the comprehensive needs of AYAs in the domains of: symptom management (sexuality and fatigue), behavior modification (return to work and exercise), and health services (advanced cancer and survivorship). These collaborations are augmented by patient education interventions and timely referrals. The objective of this article was to assist other centers in expanding existing services to address the needs of AYA patients with cancer. Cancer 2016;122:1038–1046.

Maximizing your Patient Education Skills (MPES): A multi-site evaluation of an innovative patient education skills training course for oncology health care professionals

OBJECTIVE To evaluate the acceptability and relevance of the Maximizing your Patient Education Skills (MPES) course and to determine whether it significantly improved knowledge regarding patient education (PE) theory, self-assessed PE competencies, and PE skills using case based vignettes. METHODS 1-Group, multi-site, pre-post-intervention. Participants completed a pre-assessment (T1), participated in the 4-h MPES course, and then a 3-month post-assessment (T2). A focus group was conducted with sub-set of participants. RESULTS 98 (75%) of participants completed both time points. Participants were highly satisfied with MPES and found it to be relevant. Results showed that MPES had a significant impact on all of our outcome measures. CONCLUSION Findings from this study show that oncology HCPs knowledge of patient education theory, self-assessed competencies and skills can improve after participating in a brief problem-focused and interactive workshop. PRACTICE IMPLICATIONS Given the evidence that well-planned education and support can contribute to a number of positive health outcomes and the evidence that HCPs may lack the skills to teach and support patients and their families effectively, these results suggest that MPES course may be of value to oncology professionals. Efforts to further develop this course include exploring alternative funding models and using different learning platforms.

Prevalence and nature of survivorship needs in patients with head and neck cancer

The purpose of this study was to determine the number, type, and predictors of patients with head and neck cancer unmet survivorship needs.

From Theory to Pamphlet: The 3Ws and an H Process for the Development of Meaningful Patient Education Resources

There is growing recognition of the importance of patient education given the prevalence and consequences of low health literacy in Canada and the USA. Research has shown that in addition to plain language, the use of theories of learning can contribute to the effectiveness of patient education resources, and as such, various guidelines and toolkits have been put together to help healthcare providers utilize these theories. Despite these efforts, this knowledge is not consistently applied in practice. To address this gap, we describe a new theory-based protocol, the “3Ws and an H,” that is designed to guide healthcare providers in the production of effective patient education resources. Adult learning theory underpins each step of the process, and by using the “3Ws and an H,” relevant theories are applied as the steps of the protocol are followed. To facilitate the adoption of this process, we describe it using a resource development project for survivors of endometrial cancer as an example.

Informational and Supportive Care Needs of Brain Metastases Patients and Caregivers: a Systematic Review.

While brain metastases (BM) are associated with significant morbidity and mortality, the needs of BM patients and their caregivers (CGs) remain largely unknown. The purpose of this systematic review was to summarize (a) the informational needs of BM patients and CGs, (b) their supportive care needs, and (c) studies evaluating existing programs and resources addressing one or more of informational needs. A systematic search was conducted in four databases to identify studies, published from 2000 to April 2015, discussing informational or supportive care needs of BM patients and/or their CGs. Duplicate screening, data abstraction, and risk of bias assessments were conducted. Results were qualitatively summarized. From 973 references, seven studies fulfilled inclusion criteria. While physical and medical informational needs concerning prognosis, symptom management, treatment options, and side effects were reported, no studies exploring patient or CG social, emotional, or spiritual informational needs were identified. Discordance was observed between patient, CG, and health care professional perspectives on patient supportive care needs. One study evaluated an intervention addressing informational needs. Patients required information on prognosis, managing symptoms, and available treatment options and associated side effects. They needed support managing housework, pain, and fatigue. The findings of this study suggest an ongoing need to elicit psychosocial informational needs, supportive care needs, and a need for patient- and CG-centered resource development. Since ascertaining these needs is vital to the delivery of patient-centered care, efforts must be undertaken to explore these in the context of BM patients and CGs.

The Persistence of the Pamphlet: On the Continued Relevance of the Health Information Pamphlet in the Digital Age

Since the early 2000s, web and digital health information and education has progressed in both volume and innovation (Dutta-Bergman 2006; Mano, Computers in Human Behavior 39 404 412, 2014). A growing number of leading Canadian health institutions (e.g., hospitals, community health centers, and health ministries) are migrating much of their vital public health information and education, once restricted to pamphlets and other physically distributed materials, to online platforms. Examples of these platforms are websites and web pages, eLearning modules, eBooks, streamed classrooms, audiobooks, and online health videos. The steady migration of health information to online platforms is raising important questions for fields of patient education, such as cancer education. These questions include, but are not limited to (a) are pamphlets still a useful modality for patient information and education when so much is available on the Internet? (b) If so, what should be the relationship between print-based and online health information and education, and when should one modality take precedence over the other? This article responds to these questions within the Canadian health care context.

What criteria do consumer health librarians use to develop library collections? a phenomenological study.

OBJECTIVES The criteria for determining whether resources are included in consumer health library collections are summarized in institutional collection development policies (CDPs). Evidence suggests that CDPs do not adequately capture all of these criteria. The aim of this study was to describe the resource review experience of librarians and compare it to what is described in CDPs. METHODS A phenomenological approach was used to explore and describe the process. Four consumer health librarians independently evaluated cancer-related consumer health resources and described their review process during a semi-structured telephone interview. Afterward, these librarians completed online questionnaires about their approaches to collection development. CDPs from participating libraries, interview transcripts, and questionnaire data were analyzed. Researchers summarized the findings, and participating librarians reviewed results for validation. RESULTS Librarians all utilized similar criteria, as documented in their CDPs; however, of thirteen criteria described in the study, only four were documented in CDPs. CONCLUSIONS CDPs for consumer health libraries may be missing important criteria that are considered integral parts of the collection development process. IMPLICATIONS A better understanding of the criteria and contextual factors involved in the collection development process can assist with establishing high-quality consumer health library collections.

Development of a Professional Certification in Cancer Patient Education

Patient educators come into the field from diverse professional backgrounds and often lack training in how to teach and develop patient education resources since no formal patient education professional certification program exists. A professional certification program for patient educators would further define the professional scope of practice and reduce variability in performance. The purpose of this study was to (1) determine the level of interest among Canadian cancer patient educators in a patient education professional certification program and (2) determine the competencies to be included in the professional certification program. A 12-item survey was designed by executive members of the Canadian Chapter of the Cancer Patient Education Network. The survey included a list of competencies associated with patient education, and a 4-point Likert scale ranging from “slightly important” to “very important” was used to determine the rank of each competency. The survey was sent to 53 patient educators across Canada. Ninety-two percent of the patient educators are interested in a professional certification program. Patient educators indicated that competencies related to developing patient resources, collaboration, plain language expertise, and health literacy were of most importance. Patient educators support the development of a patient education professional certification program and endorsed the competencies proposed. This information provides the foundation for the creation of a professional certification program for cancer patient educators.

Health literacy and cancer self-management behaviors: A scoping review

Increasing demands on health care systems require patients to take on more active roles in their health. Effective self‐management has been linked to improved health outcomes, and evidence shows that effective self‐management is linked to health literacy (HL). HL is an important predictor of successful self‐management in other chronic diseases but has had minimal testing in cancer.