Evaluating cancer patient-reported experience measures against health literacy best practices.

PURPOSE: Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care. METHODS: To assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement, and expert consultation were collected. Finally, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care. RESULTS: Thirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles. CONCLUSION: Cancer PREMs included in this study did not meet evidence-informed thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured and that PREMs are designed to meet the needs of all patients.

Clinical Objectives of the Canadian Licensing Examination: Exploring the Representation of Oncology.

Every physician should be comfortable caring for cancer patients, yet medical education in oncology is known as inadequate. Our study explored this issue from an assessment perspective, by determining the representation of oncology and other health priorities in the clinical learning objectives for the Medical Council of Canada Qualifying Examination Part 1 (MCCQE Part 1). The Medical Council of Canada lists objectives for the MCCQE Part 1, based on CanMEDS roles for medical graduate competency. These objectives guide exam question development and can be used as a study guide for learners. Our study focused on the Medical Expert role and mapped the clinical objectives for oncologic, cardiovascular, cerebrovascular and chronic lower respiratory disease. The clinical objectives contained 190 topics under the Medical Expert role. Oncology content was found in 57 (30%), cardiovascular disease in 56 (29.5%), cerebrovascular disease in 21 (11%) and chronic lower respiratory disease in 7 (3.7%). In objectives with oncology content, gastrointestinal cancer (16, 28%), non-specific indicators of cancer (7, 12%) and genitourinary/musculoskeletal cancers (6, 10.5%) were most frequent. Content coding had inter-rater agreement greater than 99%, with kappas from 0.73 to 1.00. Oncology was highly represented in the clinical objectives listed for the MCCQE Part 1. With existing research showing limited oncology content on examinations and in medical curricula, our results were unexpected. This finding could signal the efficacy of initiatives seeking to improve oncology education and emphasizes the importance of continuing improvements in oncology education to meet patient and healthcare system needs.

Exploring Brachytherapy Discharge Educational Needs of Gynecological Cancer Patients.

Brachytherapy (BT) plays a fundamental role in the treatment of gynecological cancers. Patient education for vaginal self-management and dilator use post-BT involves an interdisciplinary team of healthcare professionals (HCPs) and there is a paucity of post-BT education guidelines. Our objective was to determine the educational needs of gynecological cancer patients surrounding vaginal self-management post-BT and to determine enablers and barriers to the provision of education by HCPs. This cross-sectional study recruited gynecological oncology patients receiving external beam radiotherapy and BT for curative intent. Patients completed a questionnaire to assess their vaginal self-management educational needs, preferred education modality, and desired timing of post-BT education. HCPs were invited to complete a questionnaire to identify enablers and barriers to providing BT education. Twenty patients and 53 HCPs participated. All patients rated each topic as very important/important with information about preventing vaginal stenosis as the most important overall (89%). When asked about topics they addressed during BT education, most HCPs reported that "explaining what vaginal stenosis is and the negative effects of stenosis" was always discussed with patients (N = 37/49, 77%). Barriers to providing post-BT education, including the patients' language and culture, as well as enablers, such as the use of written resources and tools for patients, were identified. Despite a high level of engagement, current education surrounding vaginal self-management post-BT may be inadequate.

Health Literacy and Radiation Therapy: a Current State Assessment of Patient Education Materials.

In order to mitigate low levels of health literacy among patients, there is need to evaluate patient education (PE) materials and to ensure that the information is readily accessible to patients. The quality and comprehensiveness of radiation therapy materials were evaluated at fourteen cancer centres. To assess quality, PE leaders independently conducted readability, actionability and understandability assessments of materials. To evaluate comprehensiveness, an assessment was conducted of the scope of symptoms covered in extant materials, and the modality they were produced in (e.g. pamphlet, video). A total of 555 PE materials were reviewed for comprehensiveness and modality and seventy underwent evaluation against health literacy best practice standards. Most materials (n = 64, 91%) had a reading grade level above the recommended grade 6 ([Formula: see text] = 9, range = 4-12). Under half (n = 34, 49%) scored at or above the 80% threshold for understandability ([Formula: see text] = 74%, 33-100%) and just over half (n = 36, 51%) scored at or above the 80% target for actionability ([Formula: see text] = 71%, 33-100%). Only two cancer centres (n = 2/14, 14%) had PE materials covering the breadth of symptoms related to radiation therapy and the vast majority of materials were pamphlets (89%). Findings indicate that most radiation therapy PE materials used in cancer centres do not meet health literacy best practices, and there is a disparity between cancer centres in the topics that are available to patients and family. This evaluation highlights the need to better incorporate health literacy best practices into the development of radiation therapy PE materials and strategies to improve accessibility of such health information.

Impact of the COVID-19 Pandemic on Cancer Patient Educators.

Patient education (PE) is vital in reducing anxiety, increasing satisfaction with treatment, helping with self-management, and creating a sense of control for cancer patients. Patients access much of their material from health care providers through in-person visits, patient libraries, and in-person classes. Due to reductions in in-person visits throughout the pandemic, we sought to understand how PE programs responded under varying levels of COVID-19 restrictions to meet the information needs of patients and families. A cross-sectional survey was distributed to members of the Cancer Patient Education Network (CPEN) and the Health Care Education Association (HCEA) via the respective listservs. The survey consisted of five sections that included closed and opened questions. Participants were asked questions to describe their PE programs and how their duties were affected during the pandemic. Forty-two CPEN members completed the survey (N = 42, 66%) with a 35% response rate and a 55% completion rate, and 19 HCEA members completed the survey (N = 19, 30%) with a 5% response rate and 16% completion rate. The majority of staff surveyed were not furloughed (N = 57/64, 89%). Just under half reported a change in daily PE program activities (N = 23/52, 44%) and most reported a change in developing PE materials (e.g., pamphlets) (N = 10/26, 63%), finding information for patients/families (N = 11/19, 58%), and delivering classes (N = 12/21, 57%). COVID-19 has ushered in a new era in the delivery of PE with the rapid deployment of digital cancer patient education. Results can inform future directions for the delivery of PE post-pandemic.

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.

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.

Identifying gaps in consumer health library collections: a retrospective review.

BACKGROUND: The objective of this study was to determine if search request forms, which are used when a patron's request for information cannot be fulfilled at the time of contact with the library team, can be used to identify gaps in consumer health library collections. CASE PRESENTATION: Search request forms were collected from 2013 to 2020 and analyzed independently by two reviewers. Search request forms were included if they were complete and contained a record of how the request was fulfilled. Descriptive statistics were used to summarize patron characteristics. Search request forms were iteratively coded to identify themes in the data and determine if resources provided to patrons could be found within the library collection. The study team subsequently reviewed search request forms to determine reasons for identified gaps. Two hundred and forty-nine search request forms were analyzed. Six main content themes were identified: 1) understanding the cancer diagnosis, 2) cancer treatments, 3) understanding disease prognosis, 4) support during and after treatment, 5) natural health products and therapeutic effects in oncology, and 6) research literature. The majority of patrons were patients (53%). Over half (60%) of the submitted search request forms reflected collection gaps, and many (16%) contained queries for information about rare cancer diagnoses. The main reason that queries could not be satisfied was that there was limited consumer health information on the requested topics (53%). CONCLUSIONS: Search request forms are a useful resource for assessing gaps in consumer health library collections.

Investigating the Smoking Cessation Informational Needs of Cancer Patients and Informal Caregivers.

Continued smoking at the time of a cancer diagnosis can severely impact the efficacy of cancer patient treatment and survival. The time of diagnosis can serve as a "teachable moment" for smoking cessation education, since patients may be receptive to discussions about quitting. Caregivers may have a pivotal role in supporting patients with their cessation efforts. The purpose of this study was to identify the smoking cessation informational needs of cancer patients and their caregivers. A needs assessment survey was administered to both patients and caregivers that assessed information needs across five domains: (1) General Information and Support; (2) Smoking, Health and Disease; (3) Relationships; (4) Testimonials; (5) Interventions. Mean importance scores were determined based on the proportion of respondents who ranked how important individual items were within the broader domains. Forty patients and twenty-two caregivers completed the survey. Among patients, the mean age was 61 years, with 35% diagnosed with a head and neck malignancy and 62% reporting as current smokers. Among caregivers, the mean age was 58 years, with 81% reporting to be the patient's immediate family member and 50% as current smokers. The General Information and Support domain was rated as the most important domain for both cancer patients and caregivers. The top preferred modality for receiving smoking cessation education across all domains was pamphlets for both groups. This study identifies the key informational elements that should be considered in the development of smoking cessation resources to meet the informational needs of cancer patients and caregivers.

Predictors of prostate cancer survivors' engagement in self-management behaviors.

INTRODUCTION: Prostate cancer survivors experience a multitude of late treatment effects, resulting in greater unmet needs, elevated symptom burden, and reduced quality of life. Survivors can engage in appropriate self-management strategies post-treatment to help reduce the symptom burden. The objectives of this study were to: 1) survey the unmet needs of prostate cancer survivors using the validated Cancer Survivor Unmet Needs instrument; 2) explore predictors of high unmet needs; and 3) investigate prostate cancer survivors' willingness to engage in self-management behaviors. METHODS: Survivors were recruited from a prostate clinic and a cross-sectional survey design was employed. Inclusion criteria was having completed treatment two years prior. Descriptive statistics were used to summarize participant characteristics. Univariate and multivariate analyses were done to determine predictors of unmet needs and readiness to engage. RESULTS: A total of 206 survivors participated in the study, with a mean age of 71 years. Most participants were university/college-educated (n=123, 61%) and had an annual household income of ≥$99 999 (n=74, 38%). Participants reported erectile dysfunction (81%) and nocturia (81%) as the most frequently experienced symptoms with the greatest symptom severity χ̄=5.8 and χ̄=4.5, respectively). More accessible parking was the greatest unmet need in the quality-of-life domain (n=34/57, 60%). Overall, supportive care unmet needs were predicted by symptom severity on both univariate (p<0.001) and multivariate analyses (odds ratio [OR ] 1.81, 95% confidence interval [CI] 0.92-1.00, p<0.001). Readiness to engage in self-management was predicted by an income of <$49 000 (OR 3.99, 95% CI 1.71-9.35, p=0.0014). CONCLUSIONS: Income was the most significant predictor of readiness to engage in self-management. Consideration should be made to establishing no-cost and no-barrier education programs to educate survivors about how to engage in symptom self-management.

Advancing the Clinician Educator Career Pathway in Oncology.

PURPOSE: Education is an important component of cancer care; however, most clinician educators (CEs) receive little formal training in this area. Little is known about the factors that influence oncologists to pursue a career as a CE. The primary objective of this study was to determine the current state of oncologists' perceptions regarding the clinician educator role. MATERIALS AND METHODS: A one-time cross-sectional survey was administered to program directors/associate program directors (PDs/APDs) and fellows in November 2021. The survey was meant to elicit their perceptions regarding the CE role, training opportunities, and barriers to a career as a CE. RESULTS: The surveys were completed by a total of 2,134 oncology fellows and 88 PDs/APDs. Most PDs/APDs were female (52%), were associate professors (42%), and considered themselves a CE (82%). Over one-third of PDs/APDs reported no formal educator training (67%) and did not have a CE track for fellows at their institution (76%). The majority of PDs/APDs (80%) perceived the CE track to be a viable career pathway. Over half of fellows (56%) perceived the CE track to be a viable career pathway. Approximately one-third (62%) reported receiving CE training during their residency/fellowship. The top reported barriers to a career in medical education were a lack of jobs and opportunity for future promotions. CONCLUSION: Oncology PDs/APDs and fellows perceive the CE to be a viable career track. Greater advocacy efforts are needed to raise awareness about this career path.

The Experience of Informal Newcomer Cancer Caregivers with Limited Language Proficiency: A Scoping Review.

This scoping review explored what is known about the experiences of informal cancer caregivers (CGs) who are newcomers with limited language proficiency. A literature search was performed in seven databases and the search yielded 11,289 articles. After duplicate removal and title and abstract screening, 216 articles underwent full text review and 57 articles and were synthesized. Most studies (n = 41, 72%) were qualitative and were published in North America (n = 35, 61%). Most CG participants were female (69%) and only 19 studies explicitly identified the CG country of origin. Of those that did, 26% originated from Asia, with most migrating from East Asia. Significant challenges were experienced by newcomer CGs and chief among these were related to communication challenges with HCPs that were exacerbated by a lack of availability of medical interpreters and the complexity of oncology health information. Efforts are needed to better integrate newcomer CGs into cancer care.

Examining the Landscape of Prognostic Factors and Clinical Outcomes for Cancer Control.

Prognostic factors have important utility in various aspects of cancer surveillance, including research, patient care, and cancer control programmes. Nevertheless, there is heterogeneity in the collection of prognostic factors and outcomes data globally. This study aimed to investigate perspectives on the utility and application of prognostic factors and clinical outcomes in cancer control programmes. A qualitative phenomenology approach using expert interviews was taken to derive a rich description of the current state and future outlook of cancer prognostic factors and clinical outcomes. Individuals with expertise in this work and from various regions and institutions were invited to take part in one-on-one semi-structured interviews. Four areas related to infrastructure and funding challenges were identified by participants, including (1) data collection and access; (2) variability in data reporting, coding, and definitions; (3) limited coordination among databases; and (4) conceptualization and prioritization of meaningful prognostic factors and outcomes. Two areas were identified regarding important future priorities for cancer control: (1) global investment and intention in cancer surveillance and (2) data governance and exchange globally. Participants emphasized the need for better global collection of prognostic factors and clinical outcomes data and support for standardized data collection and data exchange practices by cancer registries.

Identifying Best Implementation Practices for Smoking Cessation in Complex Cancer Settings.

BACKGROUND: In response to evidence about the health benefits of smoking cessation at time of cancer diagnosis, Ontario Health (Cancer Care Ontario) (OH-CCO) instructed Regional Cancer Centres (RCC) to implement smoking cessation interventions (SCI). RCCs were given flexibility to implement SCIs according to their context but were required to screen new patients for tobacco status, advise patients about the importance of quitting, and refer patients to cessation supports. The purpose of this evaluation was to identify practices that influenced successful implementation across RCCs. METHODS: A realist evaluation approach was employed. Realist evaluations examine how underlying processes of an intervention (mechanisms) in specific settings (contexts) interact to produce results (outcomes). A realist evaluation may thus help to generate an understanding of what may or may not work across contexts. RESULTS: The RCCs with the highest Tobacco Screening Rates used a centralized system. Regarding the process for advising and referring, three RCCs offered robust smoking cessation training, resulting in advice and referral rates between 80% and 100%. Five RCCs surpassed the target for Accepted Referral Rates; acceptance rates for internal referral were highest overall. CONCLUSION: Findings highlight factors that may influence successful SCI implementation.

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.