Connectedness to the young adult cancer community and post-traumatic growth: A young adults with cancer in their prime study.

OBJECTIVE: For young adults (YAs) with cancer, connecting with peer cancer survivors can provide a unique sense of community and may enhance post-traumatic growth (PTG). This study examined the relationship between connectedness to the YA cancer community and PTG among YAs, independent of overall social support. METHODS: Data were obtained from the young adults with cancer in their prime study, a cross-Canada survey of YA cancer survivors. Participants were stratified by level of social support into two groups (low/high). Multivariable logistic regression was used to examine the association between PTG and connectedness to the YA community adjusting for respondent characteristics, and the interaction between support and connectedness. RESULTS: Of 444 respondents, mean age was 34.2 (SD = 6.0), time-since-diagnosis was 4.8 years (SD = 5.4), and 87% were female. Over two-thirds of respondents (71%) reported feeling connected to the YA community. Level of connectedness to the YA community did not differ by social support group, and interaction between social support and connectedness to the YA community was not significant. In the adjusted regression, connectedness to the YA community (aOR = 2.29, 95% CI: 1.10-4.91), high social support (aOR = 2.98, 95% CI: 1.36-6.74), greater time-since-diagnosis (aOR = 1.09, 95% CI: 1.04-1.15) and female sex (aOR = 2.21, 95% CI: 1.23-4.04) were associated with greater odds of moderate-to-high PTG. CONCLUSIONS: Feeling connected to a community of YA cancer peers was associated with moderate-to-high PTG among YAs, independent of overall perceived social support. Future efforts should increase access to YA cancer communities and foster a sense of connectedness among YAs with cancer.

Prostate cancer peer navigation: an observational study on navigators' well-being, benefit finding, and program satisfaction.

PURPOSE: The study investigated peer and caregiver navigators' motivations for providing support, i.e., benefit finding, their mental and physical health, and program satisfaction. METHODS: A web-based peer navigation program was conducted for prostate cancer patients and caregivers over a 6-month time period. In a one-arm observational study, peer and caregiver navigators were asked to complete standardized mental health (Hospital Anxiety and Depression Scale, Cancer Worry Scale), quality of life (EQ-5D-5L, EQ-VAS), and social support (ENRICHD Social Support Instrument) scales pre- and post-intervention and questionnaires addressing motivations, benefits, and program satisfaction post-intervention. RESULTS: Both peer and caregiver navigators reported very low anxiety and depressive symptoms across time. Cancer worry increased over time with 25% of participants exceeding the symptom threshold at baseline and 33% at follow-up. Quality of life was very high but slightly decreased over time (90.0% vs. 84.4%; p = .005), indicative of a greater number of navigators reporting pain/discomfort at follow-up. Social support was high (86.9% vs. 85.9%) and remained so. Top five role endorsements were (1) a feeling of belonging, (2) being involved in something good, (3) giving back, (4) feeling better as a person, and (5) improved communication skills. Program satisfaction was very high with support from program staff rated highest. CONCLUSIONS: The study indicates that peer and caregiver navigators exhibited favorable physical and mental health across time. Furthermore, they experienced several benefits from navigation including a sense of meaning and the wish to give back. Results suggest that support provision within the peer and caregiver navigation program has also salutary effects for navigators.

Web-Based Asynchronous Tool to Facilitate Communication Between Primary Care Providers and Cancer Specialists: Pragmatic Randomized Controlled Trial.

BACKGROUND: Cancer poses a significant global health burden. With advances in screening and treatment, there are now a growing number of cancer survivors with complex needs, requiring the involvement of multiple health care providers. Previous studies have identified problems related to communication and care coordination between primary care providers (PCPs) and cancer specialists. OBJECTIVE: This study aimed to examine whether a web- and text-based asynchronous system (eOncoNote) could facilitate communication between PCPs and cancer specialists (oncologists and oncology nurses) to improve patient-reported continuity of care among patients receiving treatment or posttreatment survivorship care. METHODS: In this pragmatic randomized controlled trial, a total of 173 patients were randomly assigned to either the intervention group (eOncoNote plus usual methods of communication between PCPs and cancer specialists) or a control group (usual communication only), including 104 (60.1%) patients in the survivorship phase (breast and colorectal cancer) and 69 (39.9%) patients in the treatment phase (breast and prostate cancer). The primary outcome was patient-reported team and cross-boundary continuity (Nijmegen Continuity Questionnaire). Secondary outcome measures included the Generalized Anxiety Disorder Screener (GAD-7), Patient Health Questionnaire on Major Depression, and Picker Patient Experience Questionnaire. Patients completed the questionnaires at baseline and at 2 points following randomization. Patients in the treatment phase completed follow-up questionnaires at 1 month and at either 4 months (patients with prostate cancer) or 6 months following randomization (patients with breast cancer). Patients in the survivorship phase completed follow-up questionnaires at 6 months and at 12 months following randomization. RESULTS: The results did not show an intervention effect on the primary outcome of team and cross-boundary continuity of care or on the secondary outcomes of depression and patient experience with their health care. However, there was an intervention effect on anxiety. In the treatment phase, there was a statistically significant difference in the change score from baseline to the 1-month follow-up for GAD-7 (mean difference -2.3; P=.03). In the survivorship phase, there was a statistically significant difference in the change score for GAD-7 between baseline and the 6-month follow-up (mean difference -1.7; P=.03) and between baseline and the 12-month follow-up (mean difference -2.4; P=.004). CONCLUSIONS: PCPs' and cancer specialists' access to eOncoNote is not significantly associated with patient-reported continuity of care. However, PCPs' and cancer specialists' access to the eOncoNote intervention may be a factor in reducing patient anxiety. TRIAL REGISTRATION: ClinicalTrials.gov NCT03333785; https://clinicaltrials.gov/ct2/show/NCT03333785.

Training prostate cancer survivors and caregivers to be peer navigators: a blended online/in-person competency-based training program.

PURPOSE: Cancer navigation improves access to support and reduces barriers to care; however, appropriate training of navigators is essential. We developed the TrueNTH Peer Navigation Training Program (PNTP), a competency-based, blended online/in-person course. In this study, we evaluate the feasibility, acceptability, and effectiveness of the PNTP among prostate cancer (PC) survivors (patients, caregivers). METHODS: We employed an explanatory mixed method study design consisting of course usage data, pre-/post-questionnaires, and focus groups informed by the Kirkpatrick framework and self-efficacy theory. RESULTS: Three cohorts in two Canadian cities (n = 26) received the PNTP. Participants were motivated to support others like themselves (n = 20), fill a gap (n = 7), pay it forward (n = 6), and offer expertise (n = 4). Recruitment, retention, and questionnaire completion were 96.7%, 89.6%, and 92%. Participants contributed a total of 426 posts to the online forums (2 to 3 posts per participant/module). Satisfaction was 9.4/10 (SD = 0.7) and usability was 84.5/100 (SD = 10.1). All learning outcomes increased: understanding of learning objectives t(23) = - 6.12, p < 0.0001; self-efficacy to perform competencies t(23) = - 4.8, p < 0.0001; and eHealth literacy t(23) = - 4.4, p < 0.0001. Participants viewed the PTNP as intensive but manageable, improving knowledge and confidence and enhancing listening skills. Participants valued the flexibility of online learning, interactive online learning, in-person interactions for relationship building, and authentic role-playing for skill development. CONCLUSIONS: A facilitated online training program with in-person components is a highly acceptable and effective format to train PC survivors to become peer navigators. This competency-based peer navigator training program and delivery format may serve as a useful model for other cancer volunteer programs.

Internet and social media use in cancer patients: association with distress and perceived benefits and limitations.

OBJECTIVE: Cancer patients may turn to social media (SM) to cope with distress. We investigated associations between distress and internet/SM use for cancer information/support. METHODS: Adult patients at a Canadian cancer centre completed a cross-sectional survey on sociodemographics, health status, use of cancer online resources and distress (EQ5D-5L). Statistical models adjusted for relevant variables. RESULTS: Of 376 participants, median age was 52 years, time since diagnosis was 1.63 years, 272 (74%) had post-secondary education and 192 (51%) were female. For cancer information/support, 276 (73%) used internet and 147 (39%) SM. Dose response relationships were observed between distress and cancer-related internet (p = 0.02), and SM use (p < 0.001). Respondents using internet/SM for cancer information/support reported greater internet confidence (internet OR = 4.0, 95% CI: 1.9-8.3; SM OR = 4.18, 95%, CI: 1.9-11.3), higher education (internet OR = 3.0, 95% CI: 1.7-5.2; SM OR = 2.21, 95% CI: 1.2-4.1) and were more likely female (internet OR = 2.6, 95% CI 1.5-4.6; SM OR = 2.1, 95% CI: 1.3-3.4). For SM for cancer information/support, more used SM > 30 min daily (OR = 3.4; 95% CI: 2.1-5.7), and were distressed (OR = 1.67, 95% CI: 1.0-2.7). SM benefits were to learn about cancer (93; 25%), distract from cancer (85; 23%) and connect with survivors (81; 22%). SM limitations were privacy (161; 43%), quality (90; 24%) and personal applicability (85; 23%). Females used SM more to connect with survivors than males (p = 0.001). CONCLUSIONS: Greater internet confidence, higher education and being female were associated with cancer-related internet/SM use. Distressed cancer patients were also more likely to turn to SM. Privacy concerns may limit SM use for coping. Future research should determine how to optimize SM in caring for and connecting with patients and reduce cancer-related distress.

Health-Related Internet Use Among Men With Prostate Cancer in Canada: Cancer Registry Survey Study.

BACKGROUND: After a prostate cancer diagnosis, men want information about their disease and treatment options. The internet offers a convenient means to deliver health information to patients with prostate cancer. However, there are concerns about the use of the internet among this largely senior population. OBJECTIVE: This study aimed to determine the patterns and factors associated with the use of the internet as a source of health information among Canadian men with prostate cancer and the features and information required in a website. METHODS: Population surveys were conducted in four Canadian provinces (British Columbia, Alberta, Saskatchewan, and Ontario) in 2014-2015. Data analyses included descriptive, bivariable, and multivariable analyses. The Pearson Chi-square and univariable regression were used to examine associations between independent variables and health-related internet use. Correlates of health-related internet use were analyzed using multivariable logistic regression. RESULTS: A total of 1362 patients responded across the four provinces. The mean age of respondents was 69 years (SD 8.2). In addition, 82% (n=1071) were internet users and 71% (n=910) used the internet daily. Further, 65% (n=784) used the internet as a source of prostate cancer information, and 40% (n=521) were confident about using information obtained from the internet to make health decisions. Men who used the internet to obtain prostate cancer information were more likely to be active information seekers (odds ratio [OR]: 4.5, 95% CI 2.6-7.8), be confident using information from the internet to make health decisions (OR: 3.6, 95% CI 2.3-5.7), have broadband internet access (OR: 1.8, 95% CI 1.2-2.7), and have more unmet supportive care needs (OR: 1.05, 95% CI 1.0-1.1). Top features wanted in a website, reported by more than 50% of respondents, were a library of resources (n=893, 65.6%), tools to support treatment decision making (n=815, 59.8%), and tools to help navigate the prostate cancer journey (n=698, 51.2%). Top three topics of information wanted in such a website were treatment options (n=916, 67.3%), disease progression (n=904, 66.4%), and management of side effects (n=858, 63%). CONCLUSIONS: Over two-thirds of Canadian patients with prostate cancer surveyed use the internet as a source of health information about prostate cancer, but over half did not feel confident using information from the internet to make health decisions. Being an active information seeker, having confidence in using information from the internet to make health decisions, having broadband internet, and having more unmet supportive care needs were significantly associated with health-related internet use. Future work should examine electronic health literacy interventions as a means to boost men's confidence in using information from the internet and design websites that include information and features that help men navigate the prostate cancer journey and support treatment decision making and management of side effects.

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment.

BACKGROUND: The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. OBJECTIVE: Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment. METHODS: We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves? RESULTS: Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered "sensitive" personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public's expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment. CONCLUSIONS: Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences.

Web-Based Tools for Text-Based Patient-Provider Communication in Chronic Conditions: Scoping Review.

BACKGROUND: Patients with chronic conditions require ongoing care which not only necessitates support from health care providers outside appointments but also self-management. Web-based tools for text-based patient-provider communication, such as secure messaging, allow for sharing of contextual information and personal narrative in a simple accessible medium, empowering patients and enabling their providers to address emerging care needs. OBJECTIVE: The objectives of this study were to (1) conduct a systematic search of the published literature and the Internet for Web-based tools for text-based communication between patients and providers; (2) map tool characteristics, their intended use, contexts in which they were used, and by whom; (3) describe the nature of their evaluation; and (4) understand the terminology used to describe the tools. METHODS: We conducted a scoping review using the MEDLINE (Medical Literature Analysis and Retrieval System Online) and EMBASE (Excerpta Medica Database) databases. We summarized information on the characteristics of the tools (structure, functions, and communication paradigm), intended use, context and users, evaluation (study design and outcomes), and terminology. We performed a parallel search of the Internet to compare with tools identified in the published literature. RESULTS: We identified 54 papers describing 47 unique tools from 13 countries studied in the context of 68 chronic health conditions. The majority of tools (77%, 36/47) had functions in addition to communication (eg, viewable care plan, symptom diary, or tracker). Eight tools (17%, 8/47) were described as allowing patients to communicate with the team or multiple health care providers. Most of the tools were intended to support communication regarding symptom reporting (49%, 23/47), and lifestyle or behavior modification (36%, 17/47). The type of health care providers who used tools to communicate with patients were predominantly allied health professionals of various disciplines (30%, 14/47), nurses (23%, 11/47), and physicians (19%, 9/47), among others. Over half (52%, 25/48) of the tools were evaluated in randomized controlled trials, and 23 tools (48%, 23/48) were evaluated in nonrandomized studies. Terminology of tools varied by intervention type and functionality and did not consistently reflect a theme of communication. The majority of tools found in the Internet search were patient portals from 6 developers; none were found among published articles. CONCLUSIONS: Web-based tools for text-based patient-provider communication were identified from a wide variety of clinical contexts and with varied functionality. Tools were most prevalent in contexts where intended use was self-management. Few tools for team-based communication were found, but this may become increasingly important as chronic disease care becomes more interdisciplinary.

Thyroid cancer survivors' perceptions of survivorship care follow-up options: a cross-sectional, mixed-methods survey.

PURPOSE: This study investigated thyroid cancer (TC) survivors' perceived satisfaction with and perceptions of survivorship care follow-up options. METHODS: Well-differentiated TC (WDTC) patients receiving follow-up care at an academic cancer centre completed a questionnaire assessing perceived satisfaction with follow-up care involving different clinicians and mediated by the Internet (email or videoconference) and their perceptions of these follow-up options. We examined associations between patient characteristics and perceived satisfaction with follow-up care options. Qualitative responses were analysed using conventional content analysis. RESULTS: Two hundred and two respondents completed the questionnaire (80 % response rate). The majority strongly agreed or agreed that they would be satisfied with specialist (surgeon, oncologist, or endocrinologist) follow-up (90.6 %) or a shared-care model that integrates specialists with primary care (67.5 %). One third (32 %) would be satisfied with video-based and 26 % with email-based specialist follow-up, 15 % with primary care alone. Longer time since diagnosis and health-related Internet use were associated with higher perceived satisfaction with Internet-based follow-up. Younger age was associated with higher perceived satisfaction with primary care follow-up. Qualitative responses (n = 145) revealed that survivors need reassurance they are receiving adequate care, regardless of the model or medium. Enablers to primary care and Internet-based follow-up are discussed. CONCLUSIONS: WDTC survivors want specialists involved in their follow-up. A specialist/primary care shared-care approach appears to be a suitable alternative to specialist-led follow-up for TC survivors. Internet-based visits could address some aspects of follow-up care for some WDTC survivors. Future work should examine patient and provider requirements for shared, multi-modal survivorship care.

Important and Feasible Actions to Address Cervical Screening Participation amongst South Asian Women in Ontario: A Concept Mapping Study with Service Users and Service Providers.

Regular cervical screening can largely prevent the development of cervical cancer and innovative methods are needed to better engage people in screening. In Ontario, Canada, South Asian women have some of the lowest rates of screening in the province. In this study, we used concept mapping to engage two stakeholder groups-South Asian service users and service providers-to identify and prioritize points of intervention to encourage the uptake of cervical screening. After participants brainstormed a master list of statements, 45 participants rated the statements based off 'importance' and 'ease to address' in relation to encouraging cervical screening. A bivariate plot (X-Y graph) that shows the average rating values for each statement across the two rating variables (a 'go-zone' display) was produced to display priorities for implementation. Statements that were considered high priority to address reflected issues around education and awareness including understanding and communication related to cervical screening and preventative care, as well as the need for trusted sources of information. Statements that were considered high priority but challenging to implement were centered around fear, stigma, discomfort, family and personal priorities. This study highlighted that stigma, norms and social relations that impact the uptake of screening must be addressed in order for education and awareness raising to be effective and to move people from conviction around screening to action.

Rural-urban differences in distress, quality of life, and social support among Canadian young adult cancer survivors: A Young Adults with Cancer in Their Prime (YACPRIME) study.

PURPOSE: Geographic location plays a significant role in the health and wellbeing of those with cancer. This project explored the impact of rurality and social support on distress and quality of life in young adults (YAs) with cancer in Canada. METHODS: The current research analyzed data from the Young Adults with Cancer in Their Prime (YACPRIME) study. Participants completed measures of emotional distress (10-item Kessler Psychological Distress Scale), quality of life (12-item Short-form Health Survey), and social support (Medical Outcomes Study-Social Support Survey). Rural and urban-dwelling survivors were compared using MANOVAs. Bivariate analyses were conducted to explore associations between distress and social support. FINDINGS: Of the sample (N = 379), 26% identified their location as rural. Rural YA cancer survivors reported higher distress and worse physical health-related quality of life (HRQOL) than survivors from urban areas but similar levels of mental-health-related quality of life. Social support appeared to have a marginally greater effect on psychosocial outcomes for urban participants. All types of social support were associated with lower levels of distress. However, different types of social support were associated more strongly with distress depending on a participant's geography. CONCLUSIONS: Rural-dwelling YA cancer survivors experience significantly more distress and poorer physical HRQOL than urban-dwelling survivors. Different needs and preferences for social support may influence the psychological health of rural cancer survivors. Additional research is needed to determine how best to understand and address distress in rural YAs with cancer.

Stage of diagnosis and survival for prostate cancer among immigrant men in Ontario, Canada.

INTRODUCTION: We previously identified specific immigrant groups (West African and Caribbean) with increased incidence of prostate cancer in Ontario, Canada. In this population-level retrospective cohort study, we used administrative databases to compare stage of diagnosis, 5-year overall survival and prostate cancer-specific survival for immigrants versus long-term residents of Ontario. METHODS: We linked several provincial-level databases available at ICES, an independent, non-profit research institute. We included all male Ontario residents 20-105 years of age who had an incident prostate cancer diagnosis date between March 31, 2008 and March 31, 2017, stratified into immigrants vs. long-term residents. We used multivariable logistic regression to determine the odds of early (stage I-II) vs. late (III-IV) stage of diagnosis, adjusting for age, co-morbidities, neighbourhood income and continuity of care. We produced Kaplan-Meier curves for 5-year overall survival and for 5-year prostate cancer-specific survival. RESULTS: Compared to long-term residents, men from West Africa (adjusted odds ratio 1.66 [95% CI 1.16-2.38], East Africa (AOR 1.54 [95% CI 1.02-2.33]) and the Caribbean (AOR 1.22 [95% CI 1.01-1.47]) had a diagnostic stage advantage, and men from South Asia were most likely to be diagnosed at a late stage. In both unadjusted and adjusted analyses, overall and prostate cancer-specific survival were higher for immigrants than long-term residents. The highest five-year overall survival was seen for men from Sub-Saharan Africa and the Caribbean, and the lowest was seen for South Asian men, where 11.7% died within five years of diagnosis. CONCLUSION: Immigrant men in Ontario with prostate cancer are more likely to be diagnosed at an early stage and to survive for 5 years than long-term residents. Among immigrant men, men from the Caribbean and Sub-Saharan Africa have the greatest stage and survival advantage and South Asian men the least. Differences in awareness, diagnostic suspicion, genetic predisposition, and social factors may play a role in these findings.

Virtual follow-up care among breast and prostate cancer patients during and beyond the COVID-19 pandemic: Association with distress.

BACKGROUND: The purpose of this study was to investigate associations between self-reported distress (anxiety/depression) and satisfaction with and desire for virtual follow-up (VFU) care among cancer patients during and beyond the COVID-19 pandemic. METHODS: Breast and prostate cancer patients receiving VFU at an urban cancer centre in Toronto, Canada completed an online survey on their sociodemographic, clinical, and technology, characteristics and experience with and views on VFU. EQ5D-5 L was used to assess distress. Statistical models adjusted for age, gender, education, income and Internet confidence. RESULTS: Of 352 participants, average age was 65 years, 48% were women,79% were within 5 years of treatment completion, 84% had college/university education and 74% were confident Internet users. Nearly, all (98%) had a virtual visit via phone and 22% had a virtual visit via video. The majority of patients (86%) were satisfied with VFU and 70% agreed that they would like VFU options after the COVID-19 pandemic. Participants who reported distress and who were not confident using the Internet for health purposes were significantly less likely to be satisfied with VFU (OR = 0.4; 95% CI: 0.2-0.8 and OR = 0.19; 95% CI: 0.09-0.38, respectively) and were less likely to desire VFU option after the COVID-19 pandemic (OR = 0.49; 95% CI: 0.30-0.82 and OR = 0.41; 95% CI: 0.23-0.70, respectively). CONCLUSIONS: The majority of respondents were satisfied with VFU and would like VFU options after the COVID-19 pandemic. Future research should determine how to optimize VFU options for cancer patients who are distressed and who are less confident using virtual care technology.

Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics.

Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.

Assessing the effectiveness of "BETTER Women", a community-based, primary care-linked peer health coaching programme for chronic disease prevention: protocol for a pragmatic, wait-list controlled, type 1 hybrid effectiveness-implementation trial.

INTRODUCTION: The Building on Existing Tools to Improve Cancer and Chronic Disease Prevention and Screening in Primary Care (BETTER) programme trains allied health professionals working in primary care settings to develop personalised chronic disease 'prevention prescriptions' with patients. However, maintenance of health behaviour changes is difficult without ongoing support. Sustainable options to enhance the BETTER programme and ensure accessibility to underserved populations are needed. We designed the BETTER Women programme, which uses a digital app to match patients with a trained peer health coach (PHC) who provides ongoing support for health behaviour change after receipt of a BETTER prevention prescription in primary care. METHODS AND ANALYSIS: We will conduct a type 1 hybrid implementation-effectiveness patient-randomised trial. Interested women aged 40-68 years will be recruited from three large, sociodemographically distinct primary care clinics (urban, suburban and rural). Patients will be randomised 1:1 to intervention or wait-list control after receipt of their BETTER prevention prescription. We will aim to recruit 204 patients per group (408 total). Effectiveness will be assessed by the primary outcome of targeted behaviours achieved for each participant at 6 months, consisting of three cancer screening tests (cervical, breast and colorectal) and four behavioural determinants of cancer and chronic disease (diet, smoking, alcohol use and physical activity). Data will be collected through patient survey and clinical chart review, measured at 3, 6 and 12 months. Implementation outcomes will be assessed through patient surveys and interviews with patients, peer health coaches and healthcare providers. An embedded economic evaluation will examine cost per quality-adjusted life-year and per additional health behavioural targets achieved. ETHICS AND DISSEMINATION: This study has been approved by Women's College Hospital Research Ethics Board (REB), the Royal Victoria Regional Health Centre REB and the University of Toronto REB. All participants will provide informed consent prior to enrolment. Participation is voluntary and withdrawal will have no impact on the usual care received from their primary care provider. The results of this trial will be published in peer-reviewed journals and shared via conference presentations. Deidentified datasets will be shared on request, after publication of results. TRIAL REGISTRATION NUMBER: NCT04746859.

TOward a comPrehensive supportive Care intervention for Older men with metastatic Prostate cancer (TOPCOP3): A pilot randomized controlled trial and process evaluation.

INTRODUCTION: Current management of metastatic prostate cancer (mPC) includes androgen receptor axis-targeted therapy (ARATs), which is associated with substantial toxicity in older adults. Geriatric assessment and management and remote symptom monitoring have been shown to reduce toxicity and improve quality of life in patients undergoing chemotherapy, but their efficacy in patients being treated with ARATs has not been explored. The purpose of this study is to examine whether these interventions, alone or in combination, can improve treatment tolerability and quality of life (QOL) for older adults with metastatic prostate cancer on ARATs. MATERIALS AND METHODS: TOPCOP3 is a multi-centre, factorial pilot clinical trial coupled with an embedded process evaluation. The study includes four treatment arms: geriatric assessment and management (GA + M); remote symptom monitoring (RSM); geriatric assessment and management plus remote symptom monitoring; and usual care and will be followed for six months. The aim is to recruit 168 patients between two cancer centres in Toronto, Canada. Eligible participants will be randomized equally via REDCap. Participants in all arms will complete a comprehensive baseline assessment upon enrollment following the Geriatric Core dataset, as well as follow-up assessments at 1.5, 3, 4.5, and 6 months. The co-primary outcomes will be grade 3-5 toxicity and QOL. Toxicities will be graded using the National Cancer Institute Common Terminology Criteria for Adverse Events version 5.0. QOL will be measured by patient self-reporting using the EuroQol 5 dimensions of health questionnaire. Secondary outcomes include fatigue, insomnia, and depression. Finally, four process evaluation outcomes will also be observed, namely feasibility, fidelity, and acceptability, along with implementation barriers and facilitators. DISCUSSION: Data will be collected to observe the effects of GA + M and RSM on QOL and toxicities experienced by older adults receiving ARATs for metastatic prostate cancer. Data will also be collected to help the design and conduct of a definitive multicentre phase III randomized controlled trial. This study will extend supportive care interventions for older adults with cancer into new areas and inform the design of larger trials. TRIAL REGISTRATION: The trial is registered at clinicaltrials.gov (registration number: NCT05582772).

Access to cancer clinical trials for racialised older adults: an equity-focused rapid scoping review protocol.

BACKGROUND: The intersection of race and older age compounds existing health disparities experienced by historically marginalised communities. Therefore, racialised older adults with cancer are more disadvantaged in their access to cancer clinical trials compared with age-matched counterparts. To determine what has already been published in this area, the rapid scoping review question are: what are the barriers, facilitators and potential solutions for enhancing access to cancer clinical trials among racialised older adults? METHODS: We will use a rapid scoping review methodology in which we follow the six-step framework of Arksey and O'Malley, including a systematic search of the literature with abstract and full-text screening to be conducted by two independent reviewers, data abstraction by one reviewer and verification by a second reviewer using an Excel data abstraction sheet. Articles focusing on persons aged 18 and over who identify as a racialised person with cancer, that describe therapies/therapeutic interventions/prevention/outcomes related to barriers, facilitators and solutions to enhancing access to and equity in cancer clinical trials will be eligible for inclusion in this rapid scoping review. ETHICS AND DISSEMINATION: All data will be extracted from published literature. Hence, ethical approval and patient informed consent are not required. The findings of the scoping review will be submitted for publication in a peer-reviewed journal and presentation at international conferences.

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

Online communities for breast cancer survivors: a review and analysis of their characteristics and levels of use.

PURPOSE: Online communities have been heralded as one of the most promising health resources on the Internet. The purpose of this study was to identify the characteristics and levels of use of online communities for breast cancer survivors. METHODS: Using Google, we identified websites with a string of computer-mediated communication terms and individual queries of three to five words of online community terms. This was complemented by a review of website resource lists and personal libraries. Two reviewers independently extracted information on their general characteristics and number of members and message board posts. A coding scheme guided content analysis. RESULTS: We found 111 websites. Most sites (n = 64, 65.8 %) had a broad focus (e.g., health, cancer, or general). One third (n = 38, 34.2 %) were exclusive to breast cancer and 11 catered to specific disease characteristics. The majority were American (n = 79, 75.2 %), nonprofit (55.0 %), and moderated (69.5 %). Most moderators (85.7 %) were staff or community members; eight sites were moderated by health professionals. Greater than one-third of sites (n = 40, 36 %) were initiated by breast cancer survivors or loved ones. Breast cancer-specific sites contained a total of 4,186,275 posts. One-third (n = 10) contained 93.4 % of posts, displaying over 100,000 posts each. As of April 3, 2012, eight sites were discontinued. CONCLUSIONS: There is a wide range of online communities available for breast cancer survivors with extensive archives of personal illness experiences. Future efforts should focus on identifying the factors that determine their success and effectiveness.