Meaningful Patient Engagement in Adolescent and Young Adult (AYA) Cancer Research: A Framework for Qualitative Studies.

Over the last two decades, patient engagement in cancer research has evolved significantly, especially in addressing the unique challenges faced by adolescent and young adult (AYA) cancer populations. This paper introduces a framework for meaningful engagement with AYA cancer patient research partners, drawing insights from the "FUTURE" Study, a qualitative study that utilizes focus groups to explore the impact of cancer diagnosis and treatment on the sexual and reproductive health of AYA cancer patients in Canada. The framework's development integrates insights from prior works and addresses challenges with patient engagement in research specific to AYA cancer populations. The framework is guided by overarching principles (safety, flexibility, and sensitivity) and includes considerations that apply across all phases of a research study (collaboration; iteration; communication; and equity, diversity, and inclusion) and tasks that apply to specific phases of a research study (developing, conducting, and translating the study). The proposed framework seeks to increase patient engagement in AYA cancer research beyond a supplementary aspect to an integral component for conducting research with impact on patients.

Direct Medical Spending on Young and Average-Age Onset Colorectal Cancer before and after Diagnosis: a Population-Based Costing Study.

BACKGROUND: Despite a better understanding of the increasing incidence of young-onset colorectal cancer (yCRC; age at diagnosis <50 years), little is known about its economic burden. Therefore, we estimated direct medical spending on yCRC before and after diagnosis. METHODS: We used linked administrative health databases in British Columbia, Canada, to create a study population of yCRC and average-age onset colorectal cancer (aCRC; age at diagnosis ≥50 years) cases, along with cancer-free controls. Over the 1-year period preceding a colorectal cancer diagnosis, we estimated direct medical spending on hospital visits, healthcare practitioners, and prescription medications. After diagnosis, we calculated cost attributable to yCRC and aCRC, which additionally included the cost of cancer treatments (e.g., chemotherapy and radiotherapy) across phases of care. RESULTS: We included 1,058 yCRC (45.4% females; age at diagnosis 42.4 ± 6.2 years) and 12,619 aCRC (44.8% females; age at diagnosis of 68.1 ± 9.2 years) cases. Direct medical spending on the average yCRC and aCRC case during the year before diagnosis was $6,711 and $8,056, respectively. After diagnosis, the overall average annualized cost attributable to yCRC significantly differed in comparison with aCRC for the initial ($50,216 vs. $37,842; P < 0.001), continuing ($8,361 vs. $5,014; P < 0.001), and end-of-life cancer phase ($86,125 vs. $61,512; P < 0.001) but not end-of-life non-cancer phase ($77,273 vs. $23,316; P = 0.372). CONCLUSIONS: Reported cost estimates may be used as inputs for future economic evaluations pertaining to yCRC. IMPACT: We provided comprehensive cost estimates for healthcare spending on young-onset colorectal cancer.

Sexual health outcomes among adolescent and young adult cancer patients: a systematic review and meta-analysis.

BACKGROUND: Sexual health outcomes (SHO), which entail the physical, emotional, mental, and social impacts, are an important consideration for adolescent and young adults (AYA, ages 15-39) affected by cancer. The objective of this systematic review and meta-analysis is to summarize the current literature and evaluate AYA cancer impact on SHO. METHODS: EMBASE and MEDLINE were searched from January 1, 2000 to September 28, 2022 to identify epidemiologic studies that used an analytic observational design, included individuals with AYA cancer and non-cancer control participants, and evaluated SHO. Odds ratios and prevalence ratios were calculated; random effects models were used to obtain pooled measures where possible. RESULTS: Of 2621 articles, 8 were included that investigated 23 SHO in 9038 AYA cancer patients. Based on the sexual response cycle, outcomes were categorized as those occurring among males (desire = 1, arousal = 1, orgasm = 4, other = 3) and females (desire = 2, arousal = 1, orgasm = 2, pain = 6, other = 3). It was feasible to conduct meta-analysis for 3 female SHO and 5 male SHO. There were associations between AYA cancer and 3 SHO: vaginal dryness (pooled odds ratio = 3.94; 95% confidence interval (CI) = 2.02 to 7.70), ejaculatory dysfunction (pooled odds ratio = 3.66; 95% CI = 2.20 to 6.08), and testosterone level (pooled mean difference = -2.56 nmol/liter; 95% CI = -3.46 to -1.66; P = .00001). CONCLUSION: This study found increased ejaculatory dysfunction and reduced testosterone levels in male AYA cancer patients and increased vaginal dryness in female AYA cancer patients, highlighting the need for sexual health resources in this population.

Patient Preferences in Metastatic Breast Cancer Care: A Scoping Review.

People with metastatic breast cancer (MBC) have diverse medical, physical, and psychosocial needs that require multidimensional care. Understanding patient preferences is crucial to tailor treatments, services, and foster patient-centered care. A scoping review was performed to summarize the current evidence on the preferences of people with MBC regarding their care to identify knowledge gaps and key areas for future research. The Embase, MEDLINE, CINAHL and PsycInfo databases were searched. Twenty studies enrolling 3354 patients met the study eligibility criteria. Thirteen quantitative studies, four mixed methods studies, and three qualitative studies were included. Seven studies captured healthcare provider perspectives; thirteen studies evaluated patient preferences relating specifically to cancer treatments; three studies evaluated preferences relating to supportive care; and four studies evaluated communication and decision-making preferences. The current literature evaluating MBC patient preferences is heterogeneous with a focus on cancer treatments. Future research should explore patient preferences relating to multidisciplinary, multi-modal care that aims to improve quality of life. Understanding MBC patient preferences regarding their comprehensive care can help tailor healthcare delivery, enhance the patient experience, and improve outcomes.

How to present work productivity loss results from clinical trials for patients and caregivers? A mixed methods approach.

OBJECTIVES: From the perspectives of patients and caregivers, the objectives were: identifying which result presentations, describing work productivity loss (WPL) outcomes, are most understandable; measuring which presentations are important to report; and investigating which WPL outcomes are viewed as important alongside clinical trials results. METHODS: We used a four phased, sequential mixed methods design, guided by patient-oriented research engaging one patient partner. We conducted think-aloud interviews, in British Columbia/Canada, to review WPL results and our survey measuring the understandability and importance of the results, and importance of each WPL outcome. We surveyed a sample representing working Canadians. The findings were summarized and analyzed using linear and logistic regression. We conducted sub-group analyses; one was gender based. All regressions were conducted using generalized estimating equations. RESULTS: In our qualitative phases, 20 patients and caregivers were interviewed. Participants recommended for the results to be brief, simple, and represented visually. Then, 118 patients and 120 caregivers were surveyed. The results presented in days or cost yielded the highest understandability and importance to report. All WPL outcomes were identified as important to somewhat important to report by most. The associations indicated that the more understandable the result presentation was, the more likely it was to be rated as important. Age was the only factor significantly associated with selecting days or cost as the most important result. CONCLUSION: Presenting WPL results in days and cost, using lay terms and visual supports, were viewed as easiest to understand and most important to report in clinical trials by patients and caregivers. Our findings are supportive of clinical trials standardizing the measurement of WPL to include all of its outcomes (absenteeism, presenteeism, employment status changes and total work productivity loss), in addition to tools assessing the comprehensiveness of WPL results to be provided to patients and caregivers.

Reproductive Health Outcomes among Adolescent and Young Adult Cancer Patients: A Systematic Review and Meta-Analysis.

BACKGROUND: This systematic review and meta-analysis (SRMA) aimed to synthesize the current literature on the impacts of adolescent and young adult (AYA, ages 15-39 years) cancer on reproductive health outcomes. METHODS: EMBASE and Medline were searched from 1 January 2000 to 26 January 2022 for observational studies that included individuals with AYA cancer and controls which evaluated reproductive health outcomes. We used random effects models and 95% confidence intervals to obtain pooled measures of associations between AYA cancer, cancer treatment, and reproductive health outcomes. RESULTS: The search identified 8625 articles; 21 were included. 62 reproductive outcomes were assessed and classified according to a sex-based framework as fetal/neonatal (n = 26), maternal (n = 11), fetal/neonatal-maternal (n = 23), and maternal-paternal (n = 2). Meta-analyses of crude estimates showed significant associations between AYA cancer and outcomes including preterm birth (pooled odds ratio [pOR] 1.31; 95% CI: 1.22, 1.42), gestational diabetes (pOR 1.43; 95% CI: 1.03, 1.99), and fertility treatment (pOR 2.66; 95% CI 1.71, 4.11). We also found higher odds of preterm birth (pOR 1.65; 95% CI: 1.21, 2.26) and low APGAR score at birth (pOR 2.03; 95% CI: 1.32, 3.13) among AYA cancer patients who received radiation compared to controls. CONCLUSIONS: Our SRMA quantified impacts of AYA cancers and treatments on several reproductive health outcomes.

The European Organisation for Research and Treatment of Cancer Quality of Life Utility-Core 10 Dimensions: Development and Investigation of General Population Utility Norms for Canada, France, Germany, Italy, Poland, and the United Kingdom.

OBJECTIVES: The European Organisation for Research and Treatment of Cancer Quality of Life Utility-Core 10 Dimensions (EORTC QLU-C10D) is a cancer-specific preference-based measure, providing health utilities for use in economic evaluations derived from the widely used health-related quality of life measure, EORTC QLQ-C30. Several EORTC QLU-C10D country-specific value sets are available. This article aimed to provide EORTC QLU-C10D general population utility norms for Canada, France, Germany, Italy, Poland, and the United Kingdom, to aid interpretability of obtained utilities in these countries. METHODS: Data were collected in aforementioned countries via a quota-sampled, cross-sectional online survey (n = 100/age-sex group; N = approximately 1000/country). Participants were asked to complete the EORTC QLQ-C30 and provide sociodemographic data. Country-specific utility norms were calculated using the respective country tariff on the country's EORTC QLQ-C30 data after weighting to achieve population representativeness for age and sex. Norm values are provided as means (SDs) by country, age, and sex groups. Tukey's multiple comparison test investigated mean differences among countries. The impact of country, age, and sex on utility values was investigated with a multiple linear regression model. RESULTS: Country-specific mean utilities range from 0.724 (United Kingdom) to 0.843 (Italy). Country-, sex-, and age-specific mean utilities range from 0.664 for 30- to 39-year-old male Canadians to 0.899 for > 70-year-old male Italians. Utilities were lower in females in 4 of 6 countries, and the impact of age differed among countries. Independent of the impact of age and sex, between-country differences were found (P ≤ .05). CONCLUSION: Results showed a varying impact of age and sex on EORTC QLU-C10D utilities and significant between-country differences. Using national utility norms and utility decrements is recommended.

Colorectal Cancer and Onset of Anxiety and Depression: A Systematic Review and Meta-Analysis.

Research suggests that colorectal cancer (CRC) is associated with mental health disorders, primarily anxiety and depression. To synthesize this evidence, we conducted a systematic review and meta-analysis of studies evaluating the onset of anxiety and depression among patients with CRC. We searched EMBASE and Medline from inception to June 2022. We included original, peer-reviewed studies that: used an epidemiologic design; included patients with CRC and a comparator group of individuals without cancer; and evaluated anxiety and depression as outcomes. We used random effects models to obtain pooled measures of associations. Quality assessment was completed using the Newcastle-Ottawa scale. Of 7326 articles identified, 8 were eligible; of which 6 assessed anxiety and depression and 2 assessed depression only. Meta-analyses showed a non-significant association between CRC and anxiety (pooled HR 1.67; 95% CI 0.88 to 3.17) and a significant association between CRC and depression (pooled HR 1.78; 95% CI 1.23 to 2.57). Predictors of anxiety and depression among patients with CRC included clinical characteristics (e.g., comorbidities, cancer stage, cancer site), cancer treatment (e.g., radiotherapy, chemotherapy, colostomy), and sociodemographic characteristics (e.g., age, sex). The impacts of anxiety and depression in patients with CRC included increased mortality and decreased quality of life. Altogether, our systematic review and meta-analysis quantified the risks and impacts of CRC on anxiety and depression, particularly an increased risk of depression after CRC diagnosis. Findings provide support for oncologic care that encompasses mental health supports for patients with CRC.

Direct medical costs of young-onset colorectal cancer: a worldwide systematic review.

BACKGROUND: Given the rising incidence of young-onset colorectal cancer (yCRC) among individuals younger than 50 years old, understanding the economic burden of yCRC is required to inform the delivery of healthcare services. Therefore, we conducted a systematic review of studies assessing the direct medical costs of yCRC, and where relevant average-age onset CRC (aCRC). METHODS: We searched MEDLINE, EMBASE, and Web of Science from inception to May 2022 for original, peer-reviewed studies, that reported direct medical costs (e.g., chemotherapy, radiotherapy, outpatient visits, inpatient care, prescription medications) for yCRC and aCRC. We used a modified version of the Consolidated Health Economic Evaluation Reporting Standards checklist to appraise the studies. Costs were inflation-adjusted to 2020 US dollars. RESULTS: We included 14 studies from 10 countries, including the USA, England, France, Korea, Vietnam, China, Italy, Australia, Canada and Japan. Five studies focused on prevalent disease and reported annualized per-capita cost of prevalent yCRC, ranging from $2,263 to $16,801 and $1,412 to $14,997 among yCRC and aCRC cases, respectively. Nine studies estimated the cost of incident disease. Synthesis of per-capita costs incurred 12 months following colorectal cancer diagnosis ranged from $23,368 to $89,945 for yCRC and $19,929 to $67,195 for aCRC. Five studies used multivariable approaches to compare costs associated with yCRC and aCRC, four showed no differences and one suggested greater costs with yCRC. CONCLUSION: Our synthesis of direct medical costs of yCRC across multiple jurisdictions provide relevant information for healthcare decisions, including on-going considerations for expanding CRC screening strategies to younger adults.

Cancer Patients' Experiences with Telehealth before and during the COVID-19 Pandemic in British Columbia.

BACKGROUND: Patients have had their cancer care either postponed or changed to telehealth visits to reduce exposure to COVID-19. However, it is unclear how these changes may have affected their experiences. We aim to identify patient characteristics that affect telehealth experiences and evaluate their preferences for using telehealth in the future. METHODS: Patients who completed the Outpatient Cancer Care (OCC) Patient Experience Survey were invited to participate. They comepleted the modified OCC Survey, which focused on telehealth during the pandemic. Linear and logistic regression analyses were used to identify patient characteristics that influenced telehealth experiences and preferences for future telehealth use. RESULTS: Perceived ease of participation in telehealth is a significant predictor of the change in patients' ratings of their telehealth experience. We found that cancer patients had lower preferences for using telehealth in the future if they were older, female, or non-white; resided in an urban area; had no previous telehealth experience; had lower education; and had poorer mental health. CONCLUSIONS: To optimize cancer care and improve equitable access to high-quality telehealth care during the pandemic and beyond, clinicians and policymakers will need to consider patients' self-reported experiences and their personal characteristics.

The FACT-8D, a new cancer-specific utility algorithm based on the Functional Assessment of Cancer Therapies-General (FACT-G): a Canadian valuation study.

INTRODUCTION: Utility instruments are used to assess patients' health-related quality of life for cost-utility analysis (CUA). However, for cancer patients, the dimensions of generic utility instruments may not capture all the information relevant to the impact of cancer. Cancer-specific utilities provide a useful alternative. Under the auspices of the Multi-Attribute Utility in Cancer Consortium, a cancer-specific utility algorithm was derived from the FACT-G. The new FACT-8D contains eight dimensions: pain, fatigue, nausea, sleep, work, support from family/friends, sadness, and worry health will get worse. The aim of the study was to obtain a Canadian value set for the FACT-8D. METHODS: A discrete choice experiment was administered to a Canadian general population online panel, quota sampled by age, sex, and province/territory of residence. Respondents provided responses to 16 choice sets. Each choice set consisted of two health states described by the FACT-8D dimensions plus an attribute representing survival duration. Sample weights were applied and the responses were analyzed using conditional logistic regression, parameterized to fit the quality-adjusted life year framework. The results were converted into utility weights by evaluating the marginal rate of substitution between each level of each FACT-8D dimension with respect to duration. RESULTS: 2228 individuals were recruited. The analysis dataset included n = 1582 individuals, who completed at least one choice set; of which, n = 1501 completed all choice sets. After constraining to ensure monotonicity in the utility function, the largest decrements were for the highest levels of pain (- 0.38), nausea (- 0.30), and problems doing work (- 0.23). The decrements of the remaining dimensions ranged from - 0.08 to - 0.18 for their highest levels. The utility of the worst possible health state was defined as - 0.65, considerably worse than dead. CONCLUSIONS: The largest impacts on utility included three generic dimensions (i.e., pain, support, and work) and nausea, a symptom caused by cancer (e.g., brain tumours, gastrointestinal tumours, malignant bowel obstruction) and by common treatments (e.g., chemotherapy, radiotherapy, opioid analgesics). This may make the FACT-8D more informative for CUA evaluating in many cancer contexts, an assertion that must now be tested empirically in head-to-head comparisons with generic utility measures.

Risk of Anxiety and Depression after Diagnosis of Young-Onset Colorectal Cancer: A Population-Based Cohort Study.

Given the increasing incidence of young-onset colorectal cancer (yCRC; <50 years), we aimed to evaluate the risk of depression and anxiety in individuals with yCRC in comparison to average-age-onset CRC (aCRC; ≥50 years) and to cancer-free controls, with stratification by sex. Our cohort study identified individuals (≥18 years) with CRC and cancer-free controls (10:1) matched on age and sex using population-based linked administrative health databases in British Columbia, Canada. We assessed depression and anxiety using validated algorithms. We evaluated the risk of depression and anxiety using multivariable Cox proportional hazard models. The cohort included 54,634 individuals with CRC (46.5% female, mean age 67.9 years) and 546,340 controls (46.5% female, mean age 67.9 years). Those with yCRC as compared to aCRC had an increased risk for depression (adjusted hazard ratio [aHR] 1.41; 95% confidence interval [CI] 1.25 to 1.60), and when stratified by sex, the risk was only significant among males (aHR 1.76; 95% CI 1.48 to 2.10). When comparing individuals with yCRC to cancer-free controls, the overall risk of depression (aHR 1.00; 95% CI 0.92 to 1.10) and anxiety (aHR 1.10; 95% CI 0.95 to 1.27) was non-significant; however, males had a significantly higher risk for mental health disorders, specifically depression (aHR 1.17; 95% CI 1.03 to 1.33). Altogether, our findings that individuals with yCRC experience higher risk of depression compared to those with aCRC as well as cancer-free controls, particularly among males, suggest effects of age and sex on mental health outcomes.

Feasibility, Acceptability, and Clinical Significance of a Dyadic, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO) Tailored to the Needs of Men with Prostate Cancer and Their Caregivers: A Multi-Center Randomized Pilot Trial.

BACKGROUND: Prostate cancer is the most common cancer diagnosis among men. Family caregivers (often female spouses) play a key role in ensuring patients' needs are met, frequently assuming their role with no formal training, which can contribute to a high burden. The purpose of this study was to pilot TEMPO-the first dyadic, Tailored, wEb-based, psychosocial and physical activity self-Management PrOgram for men with prostate cancer and their caregivers. METHODS: 49 men with prostate cancer and their caregivers were randomized to TEMPO or usual care. Baseline and follow-up questionnaires were completed to assess feasibility, acceptability, and clinical significance. A priori benchmarks for these outcomes were set. Thirteen exit interviews were conducted to further explore acceptability. RESULTS: Feasibility benchmarks were met with the exception for recruitment with on average 6.1 dyads recruited/month (benchmark: 8 dyads/month). Benchmarks of acceptability focused on attrition (<25%) and system usability, which were met. Using the strict criteria for adherence of 100% of the module viewed and participants spending at least 15 min on the module, 45% of participants were adherent. The clinical significance on anxiety and quality of life was supported for caregivers, and mostly supported for the men with prostate cancer. CONCLUSION: This pilot trial was successful, with minor modifications needed prior to a large trial.

Qualitative Research Informing a Preference Study on Selecting Cannabis for Cancer Survivor Symptom Management: Design of a Discrete Choice Experiment.

INTRODUCTION: The legalization of recreational cannabis use can enable cancer survivors to manage aspects of their care with cannabinoids without medical authorization or stigmatization. However, the absence of medical guidance-from the scientific literature or the healthcare system-makes it difficult for survivors to reach informed decisions about their care. OBJECTIVE: This article outlines the qualitative research undertaken to design a discrete choice experiment (DCE) aimed at understanding Canadian cancer survivors' preferences for managing their cancer symptoms with cannabis in this complex socio-medical context. METHODS: In this study, we drew on previously published qualitative research (a literature review and interviews with cancer survivors) and the theory of planned behavior, holding weekly team meetings to review the qualitative data and identify initial attributes associated with medicinal cannabis consumption to inform the DCE design. The initial attributes were further assessed to determine whether they were sensitive to the Canadian context, modifiable to produce levels and trade-offs, and amenable to policy intervention, in order to form the DCE choice sets. The choice sets were tested via think-aloud exercises with members of the general population and included debriefing interviews. Think-aloud participants were recruited from patient groups and previous studies. RESULTS: Based on our review of the interview study, we identified the following attributes associated with selecting medicinal cannabis: effectiveness; chance of side effects; support from family, friends, and/or physicians; cost; and availability. Ability to perform everyday activities was added and monthly out-of-pocket cost was refined to render the DCE realistic to cancer survivors in the Canadian context. Revisions to the DCE instructions, terminology, and cost levels were made based on results from the think-aloud exercises (n = 10). CONCLUSIONS: This qualitative study outlines the preference evidence collected regarding Canadian cancer survivors' decisions to manage their symptoms with cannabis to inform a DCE quantitative survey. It contributes to transparent reporting of qualitative work in DCE development and to understanding cancer survivors' preferences regarding medicinal cannabis consumption under legalization.

The Functional Assessment of Cancer Therapy Eight Dimension (FACT-8D), a Multi-Attribute Utility Instrument Derived From the Cancer-Specific FACT-General (FACT-G) Quality of Life Questionnaire: Development and Australian Value Set.

OBJECTIVES: To develop a cancer-specific multi-attribute utility instrument derived from the Functional Assessment of Cancer Therapy - General (FACT-G) health-related quality of life (HRQL) questionnaire. METHODS: We derived a descriptive system based on a subset of the 27-item FACT-G. Item selection was informed by psychometric analyses of existing FACT-G data (n = 6912) and by patient input (n = 82). We then conducted an online valuation survey, with participants recruited via an Australian general population online panel. A discrete choice experiment (DCE) was used, with attributes being the HRQL dimensions of the descriptive system and survival duration, and 16 choice-pairs per participant. Utility decrements were estimated with conditional logit and mixed logit modeling. RESULTS: Eight HRQL dimensions were included in the descriptive system: pain, fatigue, nausea, sleep, work, social support, sadness, and future health worry; each with 5 levels. Of 1737 panel members who accessed the valuation survey, 1644 (95%) completed 1 or more DCE choice-pairs and were included in analyses. Utility decrements were generally monotonic; within each dimension, poorer HRQL levels generally had larger utility decrements. The largest utility decrements were for the highest levels of pain (-0.40) and nausea (-0.28). The worst health state had a utility of -0.54, considerably worse than dead. CONCLUSIONS: A descriptive system and preference-based scoring approach were developed for the FACT-8D, a new cancer-specific multi-attribute utility instrument derived from the FACT-G. The Australian value set is the first of a series of country-specific value sets planned that can facilitate cost-utility analyses based on items from the FACT-G and related FACIT questionnaires containing FACT-G items.

A study protocol for a multicenter randomized pilot trial of a dyadic, tailored, web-based, psychosocial, and physical activity self-management program (TEMPO) for men with prostate cancer and their caregivers.

BACKGROUND: Prostate cancer predisposes patients and caregivers to a wide range of complex physical and psychosocial challenges, and interventions must incorporate a wide range of self-management strategies to help patients and their caregivers effectively cope with cancer challenges. To palliate this need, our team recently developed and evaluated the initial acceptability of a dyadic, Tailored, wEb-based, psychosocial, and physical activity self-Management PrOgram (TEMPO). TEMPO is a 10-week, interactive, web-based intervention consisting of five modules designed to help dyads manage their physical and psychosocial needs. It aims to teach dyads new self-management strategies and encourages them to increase their physical activity (PA) levels, mainly through walking and strength-based exercises. Initial acceptability evaluation of TEMPO revealed high user satisfaction, in addition to having a number of potential benefits for participants. After integrating suggested changes to TEMPO, the proposed pilot study aims to further test the acceptability and feasibility of TEMPO. METHODS: This study is a multicenter, stratified, parallel, two-group, pilot randomized control trial (RCT), where patient-caregiver dyads are randomized (stratified by anxiety level) to receive (a) TEMPO or (b) usual care. Participants (n goal = 40) are recruited across Canada at participating cancer centers and through self-referral (e.g., online recruitment). Patient inclusion criteria are (a) having received prostate cancer treatment within the past 2 years or scheduled to receive treatment, (b) identified a primary caregiver willing to participate in the study, and (c) has access to the Internet. Eligible caregivers are those identified by the patient as his primary source of support. Dyads complete a baseline questionnaire (T1) and another one 3 months later (T2) assessing various aspects of physical and emotional functioning (e.g., the Medical Outcomes Study (MOS) 12-item Short Form Health Survey (SF-12), the Hospital Anxiety and Depression Scale (HADS), and the Perceived Stress Scale (PSS)), self-management behaviors (e.g., the Health Education Impact Questionnaire (heiQ)), physical activity (the International Physical Activity Questionnaires (IPAQ) and the Multidimensional Self-efficacy for Exercise Scale (MSES)), and dyadic coping (the Dyadic Coping Inventory (DCI)). Dyads that used TEMPO are also asked to participate in a semi-structured exit interview exploring their overall experience with the program. DISCUSSION: This feasibility analysis will begin to develop the knowledge base on TEMPO's value for men with prostate cancer and their caregivers to inform a larger trial. TRIAL REGISTRATION: NCT04304196.

Virtual Oncology Appointments during the Initial Wave of the COVID-19 Pandemic: An International Survey of Patient Perspectives.

There has been rapid implementation of virtual oncology appointments in response to the COVID-19 pandemic, particularly in its first wave. Our objective was to assess patterns and perspectives towards virtual oncology appointments during the pandemic among patients with cancer undergoing active treatment. We conducted an international Internet-based cross-sectional survey. Participants were eligible if they (1) were ≥18 years of age; (2) had been diagnosed with cancer (3) were currently undergoing cancer treatment, and (4) spoke English or French. Between 23 April 2020 and 9 June 2020, 381 individuals accessed the survey, with 212 actively undergoing treatment for cancer, including 27% with colorectal, 21% with breast, 7% with prostate and 7% with lung cancer. A total of 52% of respondents were from Canada and 35% were from the United States. Many participants (129, 62%) indicated having had a virtual oncology appointment during the COVID-19 pandemic and most were satisfied with their experience (83%). We found older participants (≥50 years; adjusted OR 0.22, 95% CI 0.06 to 0.85 compared to <50 years) and those with shortest duration of treatment (≤3 months; adjusted OR 0.06; 95% CI 0 to 0.69 compared to >12 months) were less likely to be satisfied with virtual oncology appointments. Virtual health platforms used differed across countries with higher telephone use in Canada (87%) and other countries (86%) as compared to the United States (54%; p-value < 0.05), where there was higher use of video conferencing. Altogether, our findings demonstrate favorable patient perspectives towards virtual oncology appointments experienced during the first wave of the COVID-19 pandemic.

Understanding cancer survivors' reasons to medicate with cannabis: A qualitative study based on the theory of planned behavior.

BACKGROUND: Prior to nonmedical cannabis legalization in Canada, individuals were only able to access cannabis legally through licensed producers with medical authorization. Now with an additional legal access system designed for nonmedical purposes, it is unclear what factors influence cancer survivors' decisions to medicate or not medicate cannabis as a complementary therapy to alleviate their cancer symptoms. METHODS: We recruited cancer survivors via social media. Interested individuals were purposively sampled to ensure maximization in terms of age, sex, and province of residence. Constructs of the Theory of Planned Behavior were explored during the telephone interviews as participants described what influenced their decisions to medicate or not medicate cannabis to manage their symptoms. RESULTS: Interviews were conducted with 33 cancer survivors. All individuals believed that cannabis would manage their cancer symptoms. Those that chose to medicate with cannabis provided a variety of reasons, including that cannabis was a more natural alternative; that it reduced their overall number of prescription drugs; and that safer products had become available with the legalization of nonmedical cannabis. Some individuals also indicated that support from physicians and validation from family and friends were important in their decision to medicate with cannabis. Individuals who opted not to medicate with cannabis raised concerns about the lack of scientific evidence and/or possible dependency issues. Some also felt their physician's disapproval was a barrier to considering cannabis use. CONCLUSIONS: The findings revealed that recreational legalization made using cannabis appear safer and easier to access for some cancer survivors. However, physicians' censure of cannabis use for symptom management was a barrier for survivors considering its use.

Assessing how health information needs of individuals with colorectal cancer are met across the care continuum: an international cross-sectional survey.

BACKGROUND: Studies evaluating health information needs in colorectal cancer (CRC) lack specificity in terms of study samples involving patients. We assessed how health information needs of individuals with CRC are met across the care continuum. METHODS: We administered an international, online based survey. Participants were eligible for the study if they: 1) were 18 years of age or older; 2) received a diagnosis of CRC; and 3) were able to complete the online health survey in English, French, Spanish, or Mandarin. We grouped participants according to treatment status. The survey comprised sections: 1) demographic and cancer characteristics; 2) health information needs; and 3) health status and quality of life. We used multivariable regression models to identify factors associated with having health information needs met and evaluated impacts on health-related outcomes. RESULTS: We analyzed survey responses from 1041 participants including 258 who were currently undergoing treatment and 783 who had completed treatment. Findings suggest that information needs regarding CRC treatments were largely met. However, we found unmet information needs regarding psychosocial impacts of CRC. This includes work/employment, mental health, sexual activity, and nutrition and diet. We did not identify significant predictors of having met health information needs, however, among participants undergoing treatment, those with colon cancer were more likely to have met health information needs regarding their treatments as compared to those with rectal cancer (0.125, 95% CI, 0.00 to 0.25, p-value = 0.051). CONCLUSIONS: Our study provides a comprehensive assessment of health information needs among individuals with CRC across the care continuum.

Health information seeking behaviors among individuals with young-onset and average-onset colorectal cancer: an international cross-sectional survey.

PURPOSE: Our objective was to evaluate health information seeking behaviors in yCRC (young onset colorectal cancer, diagnosed ≤ 50 years) and aCRC (average-age onset colorectal cancer, diagnosed ≥ 50 years). METHODS: We administered an international, Internet-based survey to ask individuals diagnosed with CRC how they seek health information, including sources sought and utilization behaviors. We also asked participants their preferences for digital technologies. RESULTS: In total 1125 individuals including 455 with yCRC (68.6% female) and 670 with aCRC (53.5% female) participated. There were similar frequencies of seeking among participants with yCRC and aCRC across all sources except for the Internet. Healthcare providers were the most frequently sought source with similar proportions of participants indicating their response as "always" (yCRC, 43.7% vs. aCRC, 43.2%, p = 0.91). We also observed differences in utilization behaviors with more participants with yCRC using the Internet first when seeking information (yCRC 31.6% vs. aCRC 24.3%, p < 0.05) and those with aCRC seeking healthcare providers first (aCRC 61.9% vs. yCRC 45.5%, p < 0.05). With respect to digital technologies, we found a higher proportion of yCRC participants owning smartphones and indicating use of apps related to health/wellness and cancer. CONCLUSION: Individuals with yCRC and aCRC similarly sought the same resources for health information on CRC. However, they differed with respect to utilization behaviors, particularly a greater reliance on digital technologies among individuals with yCRC. These have implications for informing age-specific resources and information to support patients.