Evaluating the effect of a group pre-treatment chemotherapy psycho-education session for chemotherapy-naive gynecologic cancer patients and their caregivers.

OBJECTIVE: The objective was to evaluate the effects of a pre-chemotherapy education class on chemotherapy-naïve patients diagnosed with gynecologic cancer and their informal caregivers. METHODS: A prospective cohort study was conducted at a cancer centre in Toronto, Canada. All women diagnosed with gynecologic cancer, who were scheduled to receive chemotherapy treatment, and their caregivers were invited to attend the GyneChemo class, newly introduced as the centre's standard of care. Consenting attendees were asked to complete pre-and post-class survey measures assessing anxiety, self-efficacy, information needs, preparedness to begin chemotherapy treatment, and satisfaction with the class. RESULTS: Between September 2014 to September 2016, 642 individuals attended the GyneChemo class. 75 patients and 64 caregivers completed both pre- and post-class measures. Over 80% of participants agreed that the class was beneficial, specific to their needs, and administered in an appropriate setting. Significant increases in patient and caregiver self-efficacy (p < 0.001) and preparedness to begin chemotherapy treatment (p < 0.001) were found following class completion. Significant differences in patient's anxiety scores were found, with patients who reported an annual household income of <$25,000 experiencing increased anxiety (MD = +5.33) and patients reporting an income of $25,000-$75,000 reporting decreased anxiety (MD = -4.75) following class completion (p = 0.034). No significant difference in the average pre-post caregiver anxiety score (p = 0.207) was found. CONCLUSION: This educational model provides patients and informal caregivers with information specific to their chemotherapy regimen and disease site. Integrating pre-treatment education into cancer care has the potential to improve the survivorship experience by increasing self-efficacy, treatment preparedness, and psychological well-being.

Informational Needs of Head and Neck Cancer Patients.

The patient journey with head and neck cancer (HNC) is particularly challenging given the physical and functional impact of the cancer and treatment. The ability to perform activities of daily living can be severely compromised and have a profound impact on psychosocial well-being. These complex and long-lasting effects can affect patient quality of life for months to years and the literature shows that information for HNC patients is often insufficient. This observational cross-sectional study utilized survey methodology to investigate the informational needs of HNC patients and the preferred modalities for delivery. This was done to inform the development of resources for HNC patients. Four hundred fifty surveys were analyzed. The median age was 61 years and 58% of the cohort was born in Canada. Most were Caucasian (72%), Chinese being the next largest ethnicity (12%). A third had less than high school education and most had cancer of the oral cavity (28%) and were in long-term follow-up (41%). Comparison of the percentage of items to which a patient responded "very important" across the six domains shows variation of importance by domain (overall mixed effects regression model p < 0.0001). Additionally, each domain was compared to the medical domain and all had significantly lower mean scores (all p < 0.0001) with the medical domain scoring highest (mean score 64.6). The top preferred education modalities were teaching with a healthcare professional and pamphlets. This study highlights the type of information that HNC patients want and the format they wish to receive it in. The design provides a comprehensive way to consult with patients toward building education that responds to their specific needs.

Empowering patients and caregivers with knowledge: The development of a nurse-led gynecologic oncology chemotherapy education class.

At a Canadian cancer centre, rising patient volumes made it difficult to provide quality chemotherapy education to patients and families in the clinical setting. The gynecology oncology site identified several barriers to the provision of timely and comprehensive teaching. These barriers included receiving education after learning of a cancer diagnosis, the efficacy of written information, time constraints nurses experienced, and absence of standardized side effect management. This prompted an interdisciplinary team to review current teaching practices and engage the Patient Education Program to collaboratively develop strategies to overcome these challenges. This paper describes the development of a nurse-led chemotherapy education class tailored to patients with gynecologic cancers and focused on common chemotherapy treatment protocols. The purpose of the class was to help patients and caregivers know what to expect during their chemotherapy routine, lower anxiety, and to equip them with knowledge and skills to manage side effects of treatment.

Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study.

BACKGROUND: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. OBJECTIVE: The purpose of this research study was to deconstruct patrons' information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons' information needs (collection development). METHODS: We employed a qualitative, instrumental case study to deconstruct patrons' health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. RESULTS: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants' conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%). CONCLUSIONS: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian's ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress.

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.

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.

Naturalistic study of winter driving practices by older men and women: examination of weather, road conditions, trip purposes, and comfort.

Most studies on seniors' driving practices are based on self-reports; none have objectively examined winter driving patterns. We used electronic devices, together with trip logs, digital maps, and weather archives, to examine the driving patterns of seniors aged 65 to 91 over two consecutive weeks between November 2008 and March 2009. Night driving differed by month showing the importance of seasonal factors, particularly the amount of daylight. Although 69 per cent of the sample drove on days with adverse conditions, seniors were significantly more likely to make trips for social/entertainment purposes on days with good weather, and out-of-town trips on days with good road conditions. Driving comfort scores, particularly for night driving, were significantly related to multiple indicators of exposure and patterns, including radius from home. Compared to men, women had significantly lower driving comfort scores and were less likely to drive on days with adverse weather and road conditions.