Associations of Health Literacy and Health Outcomes Among Populations with Limited Language Proficiency: A Scoping Review.

Populations with limited language proficiency (LLP) experience difficulties understanding health information and accessing care. This study aimed to explore health literacy and LLP by examining the published literature on the barriers and facilitators to health care. METHODS: A scoping review of studies with populations in countries and regions where they have LLP in the locally dominant language was conducted. RESULTS: One-hundred and forty-three (143) articles met eligibility criteria. Most studies were conducted in North America (n = 99, 69.2%) and the primary language of study participants was Spanish (n = 32; 22.4%). Limited language proficiency was associated with low health literacy. Age was a consistent predictor of LLP, while education was predictive of low health literacy. Low health literacy was associated with poorer health outcomes. DISCUSSION: This review synthesizes the existing research regarding populations with LLP and their health literacy, demonstrating the importance that the intersection between the two has on patient experiences and behaviors.

Exploring the Perceived Educational Impact of COVID-19 on Postgraduate Training in Oncology.

This study sought to report the degree to which postgraduate trainees in radiation oncology perceive their education has been impacted by the COVID-19 pandemic. A cross-sectional online survey was administered from June to July 2020 to trainee members of the Canadian Association of Radiation Oncology (CARO) (n = 203). Thirty-four trainees responded with a 17% response rate. Just under half of participants indicated that COVID-19 had a negative/very negative impact on training (n = 15; 46%). The majority agreed/strongly agreed that they feared family/loved ones would contract COVID-19 (n = 29, 88%), felt socially isolated from friends and family because of COVID-19 (n = 23, 70%), and had difficulty concentrating on tasks because of concerns about COVID-19 (n = 17, 52%). Changes that had a negative/very negative impact on learning included limitations to travel and networking (n = 31; 91%) and limited patient contact (n = 19; 58%). Virtual follow-ups (n = 25: 76%) and in-patient care activities (n = 12; 36%) increased. Electives were cancelled in province (n = 10; 30%), out-of-province (n = 16; 49%), and internationally (n = 15; 46%). Teaching from staff was moderately reduced to completely suppressed (n = 23, 70%) and teaching to medical students was moderately reduced to completely suppressed (n = 27, 82%). Significant changes to radiation oncology training were wrought by the pandemic, and roughly half of trainees perceive that these changes had a negative impact on training. Innovations in training delivery are needed to adapt to these new changes.

COVID-19 and Cancer Patients in the Second Year of the Pandemic: Investigating Treatment Impact, Information Sources, and COVID-19-Related Knowledge, Attitudes and Practices.

BACKGROUND: The novel coronavirus that has triggered the present COVID-19 pandemic continues to spread globally, resulting in widespread morbidity and mortality. Patients with cancer remain one of the most vulnerable subsets of the population to the disease. This study examined the effects of the pandemic on cancer patients' treatment, psychology, knowledge, attitudes, and practices. METHODS: A survey was emailed to 9861 patients at a cancer centre in Toronto, Canada. Descriptive results were summarized. Qualitative feedback was coded and summarized. Regression modelling was used to explore factors associated with patient psychological well-being, knowledge, attitudes, and practices. RESULTS: A total of 1760 surveys were completed, with a response rate of 17.8%. Most participants did not experience any pandemic-related treatment delays, and vaccination rates were high. Participants who identified themselves as non-white (OR 3.30, CI: 1.30-5.30; p ≤ 0.001), and those who referred to journal articles for information (p = 0.002) reported higher psychological impact scores. There were no significant predictors of whether participants would use personal protective equipment when leaving their homes or whether they would go to crowded places. DISCUSSION: This study provides another snapshot of cancer patients perceptions and needs during the COVID-19 pandemic.

Prostate cancer survivor capacity to engage in survivorship self-management: a comparison of perceptions between oncology specialists, primary care, and survivors.

PURPOSE: The rapidly increasing number of prostate cancer survivors in tandem with a forthcoming shortage of oncology specialists in our health system poses a barrier to ensuring that high-quality survivorship care is available to support this population. As such, there is a need to consider ways to optimize survivorship care, while taking health system constraints into account. The purpose of this study is to explore the perceptions of survivorship self-management between oncology specialists, primary care providers (PCPs), and survivors themselves. METHODS: A single cross-sectional survey, relating to how prostate cancer survivorship care could be improved, was administered to each group. RESULTS: Two hundred forty-three participants (N = 206 survivors, N = 10 oncology specialists, N = 27 PCPs) completed the study survey. Most PCPs (90%) and oncology specialists (84%) perceived that an opportunity for prostate cancer survivors to have an expanded role in their care would be beneficial. Nearly half (49%) of survivors reported that it would be beneficial to have an expanded role in their survivorship care with only 11% indicating that it would not be beneficial at all. CONCLUSIONS: Barriers to developing this model involve limited oncology specialist time to execute survivorship plans, limited communication between oncology specialists and PCPs, and a lack of primary care and survivor education targeted specifically to prostate cancer survivorship.

The Cost of Patient Education Materials Development: Opportunities to Identify Value and Priorities.

The study aim was to evaluate the costs associated with developing and reviewing patient education materials (pamphlets) across Ontario cancer centers. While patient education often produces a positive return on investment, limited efforts have been dedicated to optimizing the personnel, time, and capital dedicated to this feat across healthcare systems. Patient education leaders at 14 cancer centers completed a survey measure, estimating the number of hours spent developing and reviewing pamphlets and identifying the personnel involved in each procedural step. The time expended per center in each step was then combined with average salary data for the identified personnel to derive total cost estimates. Cancer centers spend on average $5672 (SD = $3180) developing (M = $4560, SD = $2620) and reviewing (M = $1112, SD = $654) one pamphlet. This cumulates to an average per annum spending of $65,401 (SD = $75,494) for pamphlet development and $19,819 (SD = $28,524) for annual pamphlet review at each cancer center. The cost and number of hours spent developing and reviewing pamphlets varied substantially between cancer centers. While the security of budgets for patient education varies across cancer centers, opportunities to optimize human capital and monetary resources should be considered. Results of the study can be used to advocate for sustainable investment into cancer education programs, improve the coordination of educational materials production and review, and ensure that resource quality and access are consistent across the province.

The association of self-efficacy and health literacy to chemotherapy self-management behaviors and health service utilization.

BACKGROUND: Increasing demands on Canada's healthcare system require patients to take on more active roles in their health. Effective self-management has been linked to improved health outcomes; and there is evidence that effective behaviors, and subsequent healthcare utilization, are linked to self-efficacy and health literacy; however, this link has had minimal testing in the cancer context. Our aim is to examine the association between self-efficacy, health literacy, chemotherapy self-management behaviors, and health service utilization. DESIGN AND METHODS: A cross-sectional survey that included validated measures of self-efficacy, health literacy, chemotherapy self-management, and health service utilization was completed by participants (N = 213). Multivariable modeling using hierarchical linear regression was used to examine the association between variables. RESULTS: Self-efficacy contributed significantly to explaining variation in chemotherapy self-management score. Health literacy was not significantly associated with any of the dependent variables. CONCLUSION: Participants with higher self-efficacy had higher chemotherapy self-management scores compared to participants with low self-efficacy. Contrary to evidence in the chronic disease self-management literature, this study demonstrated that health literacy was not associated with chemotherapy self-management behavior nor was it associated with self-efficacy. Building patient self-efficacy in the context of chemotherapy self-management could be particularly helpful both in the cancer center and in the domain of oral chemotherapy management at home where patients are required to take on significant responsibility for self-management.

COVID-19 and patients with cancer: Investigating treatment impact, information sources, and COVID-19-related knowledge, attitudes, and practices.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has caused enormous strain on public health. Patients with cancer are particularly susceptible to the disease, and their treatment plans have been threatened by public health restrictions designed to contain the spread. METHODS: This study examined the effects of the pandemic on cancer patients' psychology, knowledge, attitudes, and practices concerning COVID-19 as well as their perceptions of the impact of COVID-19 on their cancer health care services. A survey was sent to 5800 patients at a cancer center in Toronto, Canada. Descriptive results were summarized. Qualitative feedback was coded and summarized. To examine for potential associations, regression models were tested for the outcomes of patient psychological well-being, knowledge, attitudes, and practices, and they accounted for several demographic, health literacy, and disease variables. RESULTS: A total of 1631 surveys were completed. Most patients saw their appointments shifted to virtual visits, and for a substantial minority, there was no change. A majority of the patients (62%) expressed fears about contracting the virus. There were no independent predictors of COVID-19-related knowledge. Fears were more pronounced among patients who did not speak English and those who used social media more often. Female participants, those who scored higher on knowledge questions, and those who used cancer center materials were more likely to take preventative measures against infection. CONCLUSIONS: This study provides a snapshot of the state of cancer patient treatment and the knowledge, attitudes, and practices of patients between the first 2 waves of the pandemic. The study's results can inform our understanding of adaptation to conditions during and after the outbreak.

What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care.

OBJECTIVES: The cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs. METHODS: A scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles. RESULTS: 119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs. CONCLUSION: Most caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs. PRACTICE IMPLICATIONS: Clinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.

Reinventing the wheel: The incidence and cost implication of duplication of effort in patient education materials development.

OBJECTIVE: The development of patient education (PE) materials is costly and resource-intensive, and no mechanisms exist for sharing materials across cancer centers/hospitals to limit duplicated effort. The aim of this study was to explore the incidence and cost implication of duplicated PE efforts. METHODS: PE leaders from all (14) cancer centers in Ontario, Canada, submitted their collections of systemic therapy PE materials. Materials were categorized by topic and were coded as duplicate (more than one other material exists on the same topic and there was significant content and/or textual overlap), adapted (material was adapted from an existing material) or unique (no other material addresses the topic). RESULTS: 304 materials were included and <50 % of materials had duplicate content (n = 166, 55 %), a small proportion were adapted (n = 27, 9%), and less than half were unique (n = 111, 37 %). The majority of materials were considered amenable to adaptation meaning that the content was not dependent on a specific institutional context (n = 283, 93 %). The opportunity for cost savings if duplication of effort could be avoided is approximately $800 K for systemic therapy materials produced in cancer centers. CONCLUSION: There is need to refine the process for developing PE materials. Creating mechanisms of sharing can help facilitate equal access to materials and can result in significant cost savings. PRACTICE IMPLICATIONS: Efforts are needed to better coordinate the development of PE materials among patient educators. Better coordination would allow patient education programs to focus on other important challenges.

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.