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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.

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.

(1) Background: The COVID-19 global pandemic has impacted people worldwide with unique implications for vulnerable groups. In this cross-sectional study, we examined the impact of the early pandemic on children undergoing active cancer treatment and their parents. (2) Methods: In May 2020, 30 parents of children undergoing active cancer treatment completed an online survey regarding the impact of COVID-19 on their child’s cancer care, perceived utility of telemedicine, and child and parent mental health status. (3) Results: Most participants (87%) reported that they did not experience any changes to major cancer treatments. Among those who reported using telemedicine, 78% reported this to be beneficial. Over half of the participants reported that their child’s mental health status was worse now than prior to the COVID-19 global pandemic. Parent-reported child anxiety scores were significantly higher for those who reported changes to mental health care for their child compared to those who did not report the same, t(25.99) = −3.04, p = 0.005. (4) Conclusion: Child and parent mental health status were affected when compared to pre-pandemic. Telemedicine appears to be a promising complement to face-to-face meetings for some families and warrants further exploration.

BackgroundAdolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2).MethodsBetween May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs.ResultsNinety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed.DiscussionAYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.

Introduction Paediatric cancer affects children and families from diverse backgrounds. However, there is a limited understanding of how diversity/cultural factors play a role, especially in survivorship. This protocol outlines a systematic review on the cultural influences in survivors of childhood cancer.Methods and analysis This protocol is reported based on the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA) guidelines checklist and is registered with PROSPERO. EMBASE, MEDLINE and PsycINFO are searched. Eligibility criteria include original research studies published in English, and an assessment of culture on survivors of childhood cancer. Search terms are developed with a medical librarian. Primary objective will be to describe culture (ethnic and population groups, migration status, acculturation, cultural characteristics) in survivors of paediatric cancer and study characteristics and methods. Secondary objective will be to identify the role of culture in outcomes of survivors of paediatric cancer. Data extraction will include participant characteristics such as the number of participants and/or controls, sex, age at diagnosis. Extraction will also include analytical approaches, type of cultural variables (predictor, moderator, mediator, outcome) and effect measures.Ethics and dissemination Ethical approval was not required for this systematic review. Results from this systematic review will be disseminated in line with PRISMA guidelines through peer-reviewed publications and conference presentations. Findings will also be shared with our target communities, including survivors of childhood cancer and their families, through the creation of lay summaries and/or educational workshops in the community. Knowledge gathered from this review may help to identify gaps in knowledge and directions for future research. They may also inform the development of clinical recommendations for healthcare providers of survivors of childhood cancer.PROSPERO registration number CRD42021234101.