An Evaluation of Racial and Ethnic Representation in Research Conducted with Young Adults Diagnosed with Cancer: Challenges and Considerations for Building More Equitable and Inclusive Research Practices.

The psychosocial outcomes of adolescents and young adults (AYAs) diagnosed with cancer are poorer compared to their peers without cancer. However, AYAs with cancer from diverse racial and ethnic groups have been under-represented in research, which contributes to an incomplete understanding of the psychosocial outcomes of all AYAs with cancer. This paper evaluated the racial and ethnic representation in research on AYAs diagnosed with cancer using observational, cross-sectional data from the large Young Adults with Cancer in Their Prime (YACPRIME) study. The purpose was to better understand the psychosocial outcomes for those from diverse racial and ethnic groups. A total of 622 participants with a mean age of 34.15 years completed an online survey, including measures of post-traumatic growth, quality of life, psychological distress, and social support. Of this sample, 2% (n = 13) of the participants self-identified as Indigenous, 3% (n = 21) as Asian, 3% (n = 20) as "other," 4% (n = 25) as multi-racial, and 87% (n = 543) as White. A one-way ANOVA indicated a statistically significant difference between racial and ethnic groups in relation to spiritual change, a subscale of post-traumatic growth, F(4,548) = 6.02, p < 0.001. Post hoc analyses showed that those under the "other" category endorsed greater levels of spiritual change than those who identified as multi-racial (p < 0.001, 95% CI = [2.49,7.09]) and those who identified as White (p < 0.001, 95% CI = [1.60,5.04]). Similarly, participants that identified as Indigenous endorsed greater levels of spiritual change than those that identified as White (p = 0.03, 95% CI = [1.16,4.08]) and those that identified as multi-racial (p = 0.005, 95% CI = [1.10,6.07]). We provided an extensive discussion on the challenges and limitations of interpreting these findings, given the unequal and small sample sizes across groups. We concluded by outlining key recommendations for researchers to move towards greater equity, inclusivity, and culturally responsiveness in future work.

Describing and Exploring Coping Strategies among Those Diagnosed with Cancer as an Adolescent or Young Adult: A YACPRIME Study.

A greater understanding of how young people cope with a cancer diagnosis is needed in order to inform age-appropriate supportive care. This paper describes the coping strategies used and explores relationships between coping strategies and personal, medical, and psychological variables among young adults (YAs) diagnosed with cancer. YAs (n = 547, mean age = 34.05 ± 6.00 years) completed an online survey, including the Brief COPE and measures of psychological functioning. Descriptive statistics and bivariate correlations were computed. Acceptance, self-distraction, positive reframing, and planning were the most used coping strategies by this sample. There were small (r = -0.09) to large (r = 0.51) significant relationships between personal, medical, and psychological variables and selected coping strategies. Coping with a cancer diagnosis early in life remains poorly understood. Identifying additional correlates and exploring inter- and intrapersonal variation in coping strategy use is required.

A pre-implementation examination of barriers and facilitators of an electronic prospective surveillance model for cancer rehabilitation: a qualitative study.

BACKGROUND: An electronic Prospective Surveillance Model (ePSM) uses patient-reported outcomes to monitor symptoms along the cancer pathway for timely identification and treatment. Randomized controlled trials show that ePSMs can effectively manage treatment-related adverse effects. However, an understanding of optimal approaches for implementing these systems into routine cancer care is limited. This study aimed to identify barriers and facilitators prior to the implementation of an ePSM to inform the selection of implementation strategies. METHODS: A qualitative study using virtual focus groups and individual interviews was conducted with cancer survivors, oncology healthcare providers, and clinic leadership across four cancer centres in Canada. The Consolidated Framework for Implementation Research (CFIR) guided the interviews and analysis of barriers and facilitators based on five domains (intervention characteristics, individual characteristics, inner setting, outer setting, and process). RESULTS: We conducted 13 focus groups and nine individual interviews with 13 patient participants and 56 clinic staff. Of the 39 CFIR constructs, 18 were identified as relevant determinants to the implementation. The adaptability, relative advantage, and complexity of an ePSM emerged as key intervention-level factors that could influence implementation. Knowledge of the system was important at the individual level. Within the inner setting, major determinants were the potential fit of an ePSM with clinical workflows (compatibility) and the resources that could be dedicated to the implementation effort (readiness for implementation). In the outer setting, meeting the needs of patients and the availability of rehabilitation supports were key determinants. Engaging various stakeholders was critical at the process level. CONCLUSIONS: Improving the implementation of ePSMs in routine cancer care has the potential to facilitate early identification and management of treatment-related adverse effects, thereby improving quality of life. This study provides insight into important factors that may influence the implementation of an ePSM, which can be used to select appropriate implementation strategies to address these factors.

Virtual Cancer Care Beyond the COVID-19 Pandemic: Patient and Staff Perspectives and Recommendations.

PURPOSE: COVID-19 catalyzed rapid implementation of virtual cancer care (VC); however, work is needed to inform long-term adoption. We evaluated patient and staff experiences with VC at a large urban, tertiary cancer center to inform recommendations for postpandemic sustainment. METHODS: All physicians who had provided VC during the pandemic and all patients who had a valid e-mail address on file and at least one visit to the Princess Margaret Cancer Centre in Toronto, Canada, in the preceding year were invited to complete a survey. Interviews and focus groups with patients and staff across the cancer center were analyzed using qualitative descriptive analysis and triangulated with survey findings. RESULTS: Response rates for patients and physicians were 15% (2,343 of 15,169) and 41% (100 of 246), respectively. A greater proportion of patients than physicians were satisfied with VC (80.1 v 53.4%; P < .01). In addition, fewer patients than physicians felt that virtual visits were worse than those conducted in person (28.0 v 43.4%; P < .01) and that telephone and video visits negatively affected the human interaction that they valued (59.8% v 82.0%; P < .01). Major barriers to VC for patients were respect for care preferences and personal boundaries, accessibility, and equitable access. For staff, major barriers included a lack of role clarity, dedicated resources (space and technology), integration of nursing and allied health, support (administrative, clinical, and technical), and guidance on appropriateness of use. CONCLUSION: Patient and staff perceptions and barriers to virtual care are different. Moving forward, we need to pay attention to both staff and patient experiences with virtual care since this will have major implications for long-term adoption into clinical practice.

Matched and moving: exploring daily social support among women partnered for exercise after a breast cancer diagnosis.

PURPOSE: Exercise and social support are non-pharmacological strategies that improve health and wellbeing in women treated for breast cancer (WTBC). However, strategies to facilitate support and exercise in WTBC are typically resource intensive. The purpose of this study was to examine whether various forms of social support received from a matched peer were associated with increased exercise among WTBC. METHODS: A daily diary study was conducted to examine naturally occurring social support as it relates to daily exercise behavior. Forty-six WTBC were matched (23 pairs) and completed pre-screening survey assessing eligibility and baseline levels of exercise. Participants were given Fitbit devices to track physical activity behavior and completed daily surveys across 3 weeks assessing perceptions of exercise-related social support at fixed times at the end of each day. RESULTS: Mixed models accounting for day of study, baseline support, and baseline exercise levels revealed that higher levels of daily exercise-related tangible social support were associated with more daily steps (b = 506, SE = 143) and more light physical activity (LPA) minutes (b = 7.01, SE = 3.15). Informational social support was associated with higher moderate to vigorous physical activity (MVPA) minutes (b = 3.18, SE = 1.60). CONCLUSIONS: Overall, peer matching programs aimed at increasing exercise-related social support among WTBC might encourage exercise behaviors, especially among women who share exercise-specific information (e.g., benefits, type, activities).

Risk Stratification and Cancer Follow-Up: Towards More Personalized Post-Treatment Care in Canada.

After treatment, cancer survivors require ongoing, comprehensive care to improve quality of life, reduce disability, limit complications, and restore function. In Canada and internationally, follow-up care continues to be delivered most often by oncologists in institution-based settings. There is extensive evidence to demonstrate that this model of care does not work well for many survivors or our cancer systems. Randomized controlled trials have clearly demonstrated that alternate approaches to follow-up care are equivalent to oncologist-led follow-up in terms of patient outcomes, such as recurrence, survival, and quality of life in a number of common cancers. In this paper, we discuss the state of follow-up care for survivors of prevalent cancers and the need for more personalized models of follow-up. Indeed, there is no one-size-fits-all solution to post-treatment follow-up care, and more personalized approaches to follow-up that are based on individual risks and needs after cancer treatment are warranted. Canada lags behind when it comes to personalizing follow-up care for cancer survivors. There are many reasons for this, including difficulty in determining who is best served by different follow-up pathways, a paucity of evidence-informed self-management education and supports for most survivors, poorly developed IT solutions and systems, and uneven coordination of care. Using implementation science theories, approaches, and methods may help in addressing these challenges and delineating what might work best in particular settings and circumstances.

Connecting breast cancer survivors for exercise: protocol for a two-arm randomized controlled trial.

BACKGROUND: Peer-based exercise interventions that cultivate new opportunities for support with a fellow cancer survivor may result in increased exercise volume. It is not clear whether adding qualified exercise professional (QEP) support to peer-based interventions improves health outcomes. Therefore, the purpose of this study is to determine whether breast cancer survivor (BCS) dyads who receive 10 weekly sessions of virtually delivered QEP support have improved outcomes compared to BCS dyads who do not receive QEP support. METHODS: Participants Adult BCS with medical clearance for exercise, who have an internet-connected device, and currently engage in < 150 min of moderate-intensity exercise per week. Intervention BCS will be matched using evidence-based criteria. The intervention group will receive dyadic exercise information sessions and a program tailored by a QEP for 10 weeks (intervention period) and have access to the QEP for an additional 4 weeks (tapering period). The control will not receive any QEP support. Outcomes The primary outcome is post-intervention self-reported exercise volume. Secondary outcomes include device-assessed exercise volume (i.e., Fitbit), social support, and health-related quality of life. Randomization 108 participants, matched in dyads, will be randomized 1:1 to the MatchQEP or Match groups using a web-based scheme. Statistical analysis Outcomes will be measured at baseline, post-intervention, post-tapering, and at 12 weeks post-intervention follow-up. DISCUSSION: The findings from this RCT will determine if matched BCS dyads who receive 10 weeks of virtually delivered QEP support have higher levels of self-report and device-measured exercise, social support, and health related quality of life compared to matched dyads without QEP-delivered exercise guidance. To our knowledge this will be the first study to assess the combined effect of peer- and QEP support on exercise volume. Project findings will inform and optimize intervention methods aimed to increase exercise among BCS through accessible exercise supports. TRIAL REGISTRATION: The study is registered on ClinicalTrials.gov (study identifier: NCT04771975, protocol Version Number: 2, date: July 22, 2021).

Age differences in patterns and confidence of using internet and social media for cancer-care among cancer survivors.

OBJECTIVES: The internet and social media provide information and support to cancer survivors, and adolescent and young adults (AYA, age < 40 years), adults, and older (age 65+ years) cancer survivors may have different needs. We evaluated the impact of age on cancer-related internet and social media use and confidence in evaluating online information for cancer-care decision making. MATERIALS AND METHODS: Cancer survivors completed a convenience cross-sectional survey evaluating their cancer-related internet and social media use and their confidence in using these resources for decision making. Multivariable regression models evaluated the impact of age on usage patterns and confidence. RESULTS: Among 371 cancer survivors, 58 were older adults and 138 were AYA; 74% used the internet and 39% social media for cancer care; 48% felt confident in using online information for cancer-care decisions. Compared to adult survivors, there was a non-significant trend for older survivors to be less likely to use the internet for cancer-care information(aOR = 0.49, 95% CI[0.23-1.03], P = .06), while AYA were more likely to use social media for cancer-care (aOR = 1.79[1.08-2.99], P = .03). Although confidence at using online information for cancer-care decision making did not differ between age groups, increasing age had a non-significant trend towards reduced confidence (aOR = 0.99 per year [0.97-1.00], P = .09). Most commonly researched and desired online information were causes/risk factors/symptoms, treatment options, and prognosis/outcomes. CONCLUSIONS: Age may influence the use of internet and social media for cancer-care, and older cancer survivors may be less confident at evaluating online information for cancer-care decision making. Future research should explore other strategies at meeting the informational needs of older cancer survivors.

Defining sustainability in practice: views from implementing real-world innovations in health care.

BACKGROUND: One of the key conceptual challenges in advancing our understanding of how to more effectively sustain innovations in health care is the lack of clarity and agreement on what sustainability actually means. Several reviews have helped synthesize and clarify how researchers conceptualize and operationalize sustainability. In this study, we sought to identify how individuals who implement and/or sustain evidence-informed innovations in health care define sustainability. METHODS: We conducted in-depth, semi-structured interviews with implementation leaders and relevant staff involved in the implementation of evidence-based innovations relevant to cancer survivorship care (n = 27). An inductive approach, using constant comparative analysis, was used for analysis of interview transcripts and field notes. RESULTS: Participants described sustainability as an ongoing and dynamic process that incorporates three key concepts and four important conditions. The key concepts were: (1) continued capacity to deliver the innovation, (2) continued delivery of the innovation, and (3) continued receipt of benefits. The key conditions related to (2) and (3), and included: (2a) innovations must continue in the absence of the champion or person/team who introduced it and (3a) adaptation is critical to ensuring relevancy and fit, and thus to delivering the intended benefits. CONCLUSIONS: Participants provided a nuanced view of sustainability, with both continued delivery and continued benefits only relevant under certain conditions. The findings reveal the interconnected elements of what sustainability means in practice, providing a unique and important perspective to the academic literature.

Modifiable lifestyle behaviours impact the health-related quality of life of bladder cancer survivors.

OBJECTIVE: To examine health behaviours in bladder cancer survivors including physical activity (PA), body mass index, diet quality, smoking and alcohol consumption, and to explore their relationship with health-related quality of life (HRQoL). SUBJECTS/PATIENTS AND METHODS: Cross-sectional questionnaire packages were distributed to bladder cancer survivors (muscle-invasive bladder cancer [MIBC] and non-muscle-invasive bladder cancer [NMIBC]) aged >18 years, and proficient in English. Lifestyle behaviours were measured using established measures/questions, and reported using descriptive statistics. HRQoL was assessed using the validated Bladder Utility Symptom Scale, and its association with lifestyle behaviours was evaluated using analysis of covariance (ancova) and multivariate regression analyses. RESULTS: A total of 586 participants completed the questionnaire (52% response rate). The mean (SD) age was 67.3 (10.2) years, and 68% were male. PA guidelines were met by 20% (n = 117) and 22.7% (n = 133) met dietary guidelines. In all, 60.9% (n = 357) were overweight/obese, and the vast majority met alcohol recommendations (n = 521, 92.5%) and were current non-smokers (n = 535, 91.0%). Health behaviours did not differ between MIBC and NMIBC, and cancer treatment stages. Sufficient PA, healthy diet, and non-smoking were significantly associated with HRQoL, and the number of health behaviours participants engaged in was positively associated with HRQoL (P < 0.001). CONCLUSION: Bladder cancer survivors are not meeting guidelines for important lifestyle behaviours that may improve their overall HRQoL. Future research should investigate the impact of behavioural and educational interventions for health behaviours on HRQoL in this population.

Health-related social media use and preferences of adolescent and young adult cancer patients for virtual programming.

PURPOSE: Adolescents and young adults (AYA) with cancer are increasingly using the internet and social media (SM) for cancer-related information. AYA face specific challenges and thus require tailored resources that meet their needs. We describe the internet and SM preferences of AYA related to their cancer information seeking behaviors and their preferences for a future resource compared to middle-aged adults (MAA). METHODS: Cancer patients completed a cross-sectional survey related to their internet and SM usage, cancer information, and preferences for future resources. Chi-square tests were used to compare AYA and MAA. RESULTS: The mean (±SD) age in the AYA group was 30±6.1 years (n = 129); in MAA 55±6.7 years (n = 157). In general, AYA preferred internet sites over SM platforms for cancer-related information and prefer a website platform over a SM platform for a new resource. Few AYA were aware of hospital-based AYA-specific resources. MAA were less likely to use SM compared with AYA (13% vs 4%, p = 0.01); however, websites and SM platforms that were used were similar between the 2 groups. Participants endorsed having already researched certain topics - yet, these were also those desired in a new resource. Compared to MAA, AYA sought more information on diet/nutrition, physical activity, exercise/fitness, fertility, sexual health, and body image (all p values < 0.05). CONCLUSION: AYA and MAA use similar resources on the internet and SM, but AYA sought information related to specific needs. Development of future resources should focus on an internet-based platform rather than a SM platform, coupled with promoting awareness of the resource.

Assessment of quality of life, information, and supportive care needs in patients with muscle and non-muscle invasive bladder cancer across the illness trajectory.

BACKGROUND: To date, little research has examined the quality of life and cancer-associated needs of bladder cancer patients. The objective of the current study was to assess the quality of life (QoL), informational needs, and supportive care needs (SCN) in a large sample of muscle invasive (MIBC) and non-muscle invasive (NMIBC) bladder cancer survivors across the treatment trajectory (newly diagnosed and undergoing treatment, post-treatment follow-up, and treatment for advanced/recurrent disease). METHODS: Questionnaires were distributed to a convenience sample of patients registered with Bladder Cancer Canada, the Princess Margaret Cancer Centre, or The Ottawa Hospital. Eligibility criteria included being > 18 years of age, English-speaking, and diagnosed with bladder cancer. The questionnaire included an adapted tool to measure informational needs, and validated measures for QoL (Bladder Utility Symptom Scale, BUSS) and SCN (Cancer Survivors' Unmet Needs Measure, CaSUN). QoL scores and unmet needs were calculated and compared between disease groups and cancer trajectory groups. RESULTS AND LIMITATIONS: Of the 1126 surveys distributed, 586 were completed (response = 52%). Mean age was 67.3 ± 10.2 years, and 401 participants (68.7%) were male. The mean QoL score (BUSS) for the sample was 78.1 ± 17.9 (median 81.7). Respondents with MIBC had significantly lower QoL scores compared to NMIBC. Further, scores differed across the cancer phase groups with the follow-up surveillance group having significantly higher QoL scores compared to the newly diagnosed and advance/recurrent disease groups. The ten most highly ranked informational needs were from the medical, physical, and practical domains. Eighty-eight percent (95% CI 85-91%) of respondents reported at least one SCN, with a median of 12. Over half of the participants (54%, 95% CI 49-59%) had at least one unmet need and 15% had ≥ 10 unmet needs. Newly diagnosed participants had the highest number of unmet needs. CONCLUSION: We found that the number of unmet supportive care needs and quality of life differed across cancer trajectory and disease groups. Future efforts should focus on the development and evaluation of tailored resources and programs to address the needs of people diagnosed and treated for BC.

Making their decisions for prostate cancer treatment: Patients' experiences and preferences related to process.

INTRODUCTION: We sought to determine the experiences and preferences of prostate cancer patients related to the process of making their treatment decisions, and to the use of decision support. METHODS: Population surveys were conducted in four Canadian provinces in 2014-2015. Each provincial cancer registry mailed surveys to a random sample of their prostate cancer patients diagnosed in late 2012. Three registries' response rates were 46-55%; the fourth used a different recruiting strategy, producing a response rate of 13% (total n=1366). RESULTS: Overall, 90% (n=1113) of respondents reported that they were involved in their treatment decisions. Twenty-three percent (n=247) of respondents wanted more help with the decision than they received and 52% of them (n=128) reported feeling well-informed. Only 51% (n=653) of all respondents reported receiving any decision support, but an additional 34% (n=437) would want to if they were aware of its existence. A quarter (25%, n=316) of respondents found it helpful to use a decision aid, a type of decision support that provides assistance to decision processes and provides information, but 64% (n=828) reported never having heard of decision aids; 26% (n=176) of those who had never heard of decision aids wanted more help with the decision than they received compared to 13% (n=36) of those who had used a decision aid. CONCLUSIONS: The majority of respondents wanted to participate in their treatment decisions, but a portion wanted more help than they received. Half of those who wanted more help felt well-informed, thus, needed support beyond information. Decision aids have potential to provide information and support to the decision process.

Prostate cancer patients' experience and preferences for acquiring information early in their care.

INTRODUCTION: Prostate cancer patients' information needs are well-described, but little is known about their preferred sources and media for obtaining information. We sought to determine prostate cancer patients' experiences and preferences for acquiring information after diagnosis, a time of high information need. METHODS: Population surveys were conducted in four Canadian provinces in 2014-2015. Each provincial cancer registry surveyed a random sample of prostate cancer patients diagnosed in late 2012. RESULTS: A total of 1366 patients responded across provinces. Respondents most frequently tried to obtain information from their urologist; 86% found that easy and 9% found it difficult. Seventy-nine percent of respondents who saw only a urologist felt well-informed compared to 86% of those who saw both a urologist and a radiation oncologist. Eighty-five percent of respondents wanted printed information; 68% wanted it electronically. Respondents' most frequent barriers to obtaining information from physicians were: not actually having enough time (31%), worrying about having enough time (23%), and worrying about asking too many questions (18%). Their most frequent barriers related to internet/printed information, respectively, were uncertainty about quality (63%/49%) and unclear if personally applicable (56%/49%). Recommended facilitators were having a navigator (85%), providing printed information (85%), and someone to answer questions: in person (90%), by phone (66%), or via email (58%). CONCLUSIONS: Prostate cancer patients want urologists to provide them with information and are more likely to report being informed if they see both a urologist and a radiation oncologist. Optimal information provision requires that it be provided both on the internet and in print.

Practice patterns and perceptions of survivorship care in Canadian genitourinary oncology: A multidisciplinary perspective.

INTRODUCTION: There is little knowledge of survivorship care specific to genitourinary (GU) cancers. To improve care delivery to this patient population, we need to clearly define physician perceptions of survivorship care. We therefore conducted a study to determine the challenges to GU cancer survivorship care in Canada. METHODS: A web-based questionnaire was e-mailed to physicians treating GU cancers in Canada, including urologists, radiation oncologists, and medical oncologists. Five domains were assessed: demography, current post-cancer treatment care, perspectives on barriers to survivorship care, accessibility to survivorship resources, and perspectives about advocacy groups. RESULTS: There were 306 responses, with 260 eligible for study. A total of 82% of physicians involve primary care practitioners (PCPs) at some point in survivorship care. Most physicians provide some form of written follow-up plan to PCPs. However, only 25% provided lifestyle recommendations and 53% included persistent and late effects of therapy. Lack of time or resources dedicated to survivorship care was the most commonly reported barrier. There was variation in accessibility to survivorship support programs among different subspecialties and regions. Advocacy groups generally were underutilized, particularly in testis cancer. Low response rate and the potential response bias are the main limitations of this survey. CONCLUSION: To our knowledge this is the first study to address the challenges of GU cancer survivorship care in Canada. The barriers and accessibility of survivorship care quoted in this survey may be used to improve care for this group of patients. Underutilization of advocacy groups may stimulate the advocacy groups and institutions to address its causes and solutions.

Electronic surveillance of testicular cancer: understanding patient perspectives on access to electronic medical records.

This study explores the basis for providing effective access to electronic medical record data as a reference source for patients with early-stage testicular cancer undergoing surveillance follow-up programs.