Pathways to cancer care after a suspected cancer diagnosis in the emergency department: a survey of emergency physicians across Ontario.

INTRODUCTION: Little is known about how patients are managed after a suspected cancer diagnosis through the emergency department. The objective of this study was to examine the ED management, specifically referral practices, for ten suspected cancer diagnoses by emergency physicians across Ontario and to explore variability in management by cancer-type and centre. METHODS: An electronic survey was distributed to emergency physicians across Ontario, asking about referral practices for patients who could be discharged from the ED with one of ten suspected cancer diagnoses. Options for referral included: in-ED consult, outpatient medical or surgical specialists, surgical or medical oncology, and specialized cancer clinics. Data were described using frequencies and proportions. Variance partition coefficients were calculated to determine variation in responses attributed to differences between hospitals, with physicians nested within hospitals. RESULTS: 262 physicians from 54 EDs responded. Across most cancers, emergency physicians would refer to surgical specialists for further work-up; however, this ranged from 30.2% for lung cancer to 69.5% for head and neck cancer. For patients with an unknown primary malignancy, most physicians would refer to internal medicine clinic (34.3%) or obtain an in-ED consult (25.0%). Few physicians would refer directly to surgical or medical oncology from the ED. Comments suggest this may be due to oncologists requiring tissue confirmation of malignancy. Most referrals to specialized clinics were for suspected lung (30.2%) or breast cancer (19.5%); however, these appear to only be available at some centres. Variance in referrals between hospitals was lowest for breast cancer (variance partition coefficient = 8.6%) and highest for unknown primary malignancies (variance partition coefficient = 29.8%). INTERPRETATION: Physician management of new suspected cancer varies between EDs and is specific to cancer type. Strategies to standardize access to cancer care in a timely and equitable way for patients with newly suspected cancer in the ED are needed.

RéSUMé: INTRODUCTION: On sait peu de choses sur la façon dont les patients sont traités après un diagnostic de cancer présumé par le service des urgences. Cette étude avait pour objectif d'examiner la gestion de l'urgence, plus particulièrement les pratiques d'aiguillage, pour 10 diagnostics de cancer présumés par des médecins urgentistes en Ontario et d'explorer la variabilité dans la gestion selon le type de cancer et le centre. MéTHODES: Un sondage électronique a été distribué aux médecins d'urgence de l'ensemble de l'Ontario, leur demandant quelles étaient les pratiques d'aiguillage pour les patients qui pourraient être libérés du service de réanimation avec un des 10 diagnostics de cancer présumés. Options de référence : consultation en salle d'urgence, spécialistes externes en médecine ou en chirurgie, oncologie chirurgicale ou médicale, cliniques spécialisées en cancer. Les données ont été décrites à l'aide de fréquences et de proportions. Les coefficients de partage des variances ont été calculés pour déterminer la variation des réponses attribuées aux différences entre les hôpitaux, les médecins étant nichés dans les hôpitaux. RéSULTATS: 262 médecins de 54 DE ont répondu. Dans la plupart des cas de cancer, les médecins d'urgence ont fait appel à des spécialistes en chirurgie pour poursuivre leurs travaux; toutefois, ce pourcentage allait de 30,2 % pour le cancer du poumon à 69,5 % pour le cancer de la tête et du cou. Pour les patients présentant une tumeur maligne primaire inconnue, la plupart des médecins se référaient à une clinique de médecine interne (34,3 %) ou obtiennent une consultation en salle d'urgence (25,0 %). Peu de médecins se réfèrent directement à l'oncologie chirurgicale ou médicale depuis le DE. Les commentaires suggèrent que cela pourrait être dû aux oncologues qui ont besoin d'une confirmation tissulaire de la malignité. La plupart des renvois vers des cliniques spécialisées étaient pour les cas suspects de cancer du poumon (30,2 %) ou du sein (19,5 %), mais ces services ne semblent être disponibles que dans certains centres. La variance des renvois entre les hôpitaux était la plus faible pour le cancer du sein (coefficient de partage de la variance = 8,6 %) et la plus élevée pour les tumeurs malignes primaires inconnues (coefficient de partage de la variance = 29,8 %). INTERPRéTATION: La prise en charge par le médecin des nouveaux cancers suspectés varie selon les DE et est propre au type de cancer. Des stratégies visant à normaliser l'accès aux soins oncologiques de façon équitable et en temps opportun pour les patients dont on soupçonne qu'ils ont un nouveau cancer dans la DE sont nécessaires.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

A qualitative study on healthcare professional and patient perspectives on nurse-led virtual prostate cancer survivorship care.

BACKGROUND: Virtual nurse-led care models designed with health care professionals (HCPs) and patients may support addressing unmet prostate cancer (PCa) survivor needs. Within this context, we aimed to better understand the optimal design of a service model for a proposed nurse-led PCa follow-up care platform (Ned Nurse). METHODS: A qualitative descriptive study exploring follow-up and virtual care experiences to inform a nurse-led virtual clinic (Ned Nurse) with an a priori convenience sample of 10 HCPs and 10 patients. We provide a health ecosystem readiness checklist mapping facilitators onto CFIR and Proctor's implementation outcomes. RESULTS: We show that barriers within the current standard of care include: fragmented follow-up, patient uncertainty, and long, persisting wait times despite telemedicine modalities. Participants indicate that a nurse-led clinic should be scoped to coordinate care and support patient self-management, with digital literacy considerations. CONCLUSION: A nurse-led follow-up care model for PCa is seen by HCPs as acceptable, feasible, and appropriate for care delivery. Patients value its potential to provide role clarity, reinforce continuity of care, enhance mental health support, and increase access to timely and targeted care. These findings inform design, development, and implementation strategies for digital health interventions within complex settings, revealing opportunities to optimally situate these interventions to improve care.

Prostate cancer (PCa) survivors in Canada receive follow-up care after treatment through a specialist-led model, which is currently straining to meet patient needs. We interviewed healthcare providers (HCPs) and patients to investigate the design and development of a healthcare service that uses technology, also known as virtual care, to provide nurse-led follow-up care. Mixed experiences with virtual care informed participant feedback and concerns, including impacts of the pandemic and digital literacy considerations. We show that HCPs and patients see potential benefit in virtual nurse-led follow-up care if it can increase access to resources, clarify patient and provider care roles, and improve access and continuity of care. This type of approach to follow-up care may help to improve survivor quality of life and PCa follow-up care while extending the reach of healthcare systems with limited resources.

An Actionable Expert-System Algorithm to Support Nurse-Led Cancer Survivorship Care: Algorithm Development Study.

BACKGROUND: Comprehensive models of survivorship care are necessary to improve access to and coordination of care. New models of care provide the opportunity to address the complexity of physical and psychosocial problems and long-term health needs experienced by patients following cancer treatment. OBJECTIVE: This paper presents our expert-informed, rules-based survivorship algorithm to build a nurse-led model of survivorship care to support men living with prostate cancer (PCa). The algorithm is called No Evidence of Disease (Ned) and supports timelier decision-making, enhanced safety, and continuity of care. METHODS: An initial rule set was developed and refined through working groups with clinical experts across Canada (eg, nurse experts, physician experts, and scientists; n=20), and patient partners (n=3). Algorithm priorities were defined through a multidisciplinary consensus meeting with clinical nurse specialists, nurse scientists, nurse practitioners, urologic oncologists, urologists, and radiation oncologists (n=17). The system was refined and validated using the nominal group technique. RESULTS: Four levels of alert classification were established, initiated by responses on the Expanded Prostate Cancer Index Composite for Clinical Practice survey, and mediated by changes in minimal clinically important different alert thresholds, alert history, and clinical urgency with patient autonomy influencing clinical acuity. Patient autonomy was supported through tailored education as a first line of response, and alert escalation depending on a patient-initiated request for a nurse consultation. CONCLUSIONS: The Ned algorithm is positioned to facilitate PCa nurse-led care models with a high nurse-to-patient ratio. This novel expert-informed PCa survivorship care algorithm contains a defined escalation pathway for clinically urgent symptoms while honoring patient preference. Though further validation is required through a pragmatic trial, we anticipate the Ned algorithm will support timelier decision-making and enhance continuity of care through the automation of more frequent automated checkpoints, while empowering patients to self-manage their symptoms more effectively than standard care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2020-045806.

A comparison of the sociodemographic, medical, and psychosocial characteristics of adolescents and young adults diagnosed with cancer recruited in-person and online: A Canadian cross-sectional survey.

Introduction: Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples. Methods: Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members', and community partners' social media channels, and email newsletters. Independent sample t-tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source. Results: Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white (p < .001), women (p < .001), and Canadian-born (p < .001); to speak English at home (p < .001), live alone (p = .001) and live in rural settings (p = .014); and to be farther from diagnosis (p = .023), diagnosed with breast cancer (p < .001), and cancer free (p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness (p < .001), and lower social support (p < .001), self-efficacy for coping with cancer (p < .001), and life satisfaction (p = .006). Conclusions: Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs.

Understanding sleep quality in a national cohort of young adult cancer survivors: Results from the YACPRIME study.

PURPOSE: A cancer diagnosis in young adulthood can negatively impact sleep quality. The present study describes sleep issues in young adults (YAs) and analyzes potential demographic and clinical characteristics related to sleep quality. METHODS: Canadian YAs (n = 359) diagnosed with cancer between ages 15-39 participated in the study. Pittsburgh Sleep Quality Index (PSQI) items were examined to identify specific sleep issues that occurred 3+ times per week. Logistic regression was used to examine demographic, clinical, and symptom-related variables associated with poor sleep quality (defined as a PSQI global score >8) and sleep medication use. RESULTS: Participants were predominantly female (87.5%) with an average age of 32 years. Of the sample, 52% had poor sleep quality, 55.5% took >30 min to fall asleep, 32.9% slept <7 h, and 54.6% reported a habitual sleep efficiency of <85%. YAs with poor sleep quality were 5.7 times more likely to report severe distress (p=<.001), as well as 1.8 times more likely to report poorer mental (p = .03) and physical functioning (p = .05). Nearly half (44%) of YAs used sleep medication to help them sleep. YAs who reported severe psychological distress were 2.4 times more likely to use sleeping medication (p = .01), whereas those with a household income ≥$100,000/year were half as likely to use medication to help with sleep (p = .04). CONCLUSION: Psychological distress is associated with worse sleep quality and sleep medication use in YA cancer survivors. Sleep quality may be a possible target for future research and intervention to promote long-term function and recovery.

An Investigation of Social Status among Adolescents and Young Adults Who Have Been Diagnosed with Cancer in Canada.

BACKGROUND: Aims were to: (1) compare social status among AYAs diagnosed with cancer to a community population; (2) describe AYAs' change in employment/education status; and (3) examine predictors of social status. METHOD: Social status (i.e., education, employment, relationship status, and living arrangement) was captured from young adults diagnosed with cancer recruited via social media through a community-based organization from across Canada and randomly matched to a community sample by sex, age, province of residence, total household income and race/ethnicity at a ratio of 1:3. RESULTS: AYAs with cancer (N = 622) were an average of 4.45 (SD = 5.42) years from the completion of treatment and were less likely to be employed (χ2 = 96.35, p < 0.001) and more likely to be living at home with parents (χ2 = 17.00, p < 0.001). There were no differences in education or relationship status. Overall, 41% and 45% of AYAs reported quitting school or work, respectively. Non-metastatic disease (AOR 3.23, 95% CI 1.08-9.62), and better physical (AOR 1.07 95% CI 1.04-1.10) and mental quality of life (QOL)(AOR 1.06 95% CI 1.03-1.09), were associated with employment. Worse mental QOL (AOR 1.04 95% CI 1.01-1.07), less post-traumatic growth (AOR 1.01 95% CI 1.00-1.03), and social support (AOR 0.27, 95% CI 0.18-0.41) were associated with being single. Non-White race (AOR 3.19 95% CI 1.02-9.97) and less post-traumatic growth (AOR 0.97 95% CI 0.95-0.99) were associated with living with parents. CONCLUSIONS: AYAs diagnosed with cancer experience differences in attainment of employment and independent living compared to a community sample. These challenges may have implications for physical and mental QOL.

Implementation of a Web-Based Communication System for Primary Care Providers and Cancer Specialists.

Healthcare providers have reported challenges with coordinating care for patients with cancer. Digital technology tools have brought new possibilities for improving care coordination. A web- and text-based asynchronous system (eOncoNote) was implemented in Ottawa, Canada for cancer specialists and primary care providers (PCPs). This study aimed to examine PCPs' experiences of implementing eOncoNote and how access to the system influenced communication between PCPs and cancer specialists. As part of a larger study, we collected and analyzed system usage data and administered an end-of-discussion survey to understand the perceived value of using eOncoNote. eOncoNote data were analyzed for 76 shared patients (33 patients receiving treatment and 43 patients in the survivorship phase). Thirty-nine percent of the PCPs responded to the cancer specialist's initial eOncoNote message and nearly all of those sent only one message. Forty-five percent of the PCPs completed the survey. Most PCPs reported no additional benefits of using eOncoNote and emphasized the need for electronic medical record (EMR) integration. Over half of the PCPs indicated that eOncoNote could be a helpful service if they had questions about a patient. Future research should examine opportunities for EMR integration and whether additional interventions could support communication between PCPs and cancer specialists.

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.

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.