Background: Survivors of childhood cancer are at risk of medical, psychological, and social late effects. To screen for their risks, receipt of consistent, cancer-specific follow-up care is crucial. However, <50% of survivors attend their aftercare, and only 35% of them recognize that they could have a serious health problem. The use of mobile health (mHealth) is a promising form of intervention to educate, connect, and empower survivors of childhood cancer on the importance of follow-up care. Objective: This study aimed to use co-design to identify the priority components to include in an mHealth intervention with young adult (aged between 18 and 39 years) survivors of childhood cancer and health care providers. Methods: This study was conducted between January and November 2022 in Canada and used patient-oriented research methods. Participants were recruited through local or provincial long-term follow-up clinics, using convenience sampling from patient partners who assisted in recruiting survivors across geographical areas in western, central, and eastern Canada, and social media outreach (X, formally known as Twitter; Facebook; and Instagram). Qualitative descriptive data (focus group interviews) from survivors of childhood cancer and health care providers (individual interviews) were gathered. We analyzed the collected data using reflexive thematic analysis and verified it through member checking techniques through an online community engagement event. Results: We conducted with patient partners 5 online (Zoom) focus groups with 22 survivors of childhood cancer (mean age 29.19, SD 4.78 y). We conducted individual telephone interviews with 7 health care providers. Participants identified five priority areas to be included in an mHealth intervention: (1) connections, (2) education and information, (3) engagement, (4) personalization, and (5) resources. Results were shared with and validated by survivors of childhood cancer, their families, health care providers, and academic researchers as part of a community engagement event. Small and large group discussions were facilitated to allow participants to review and discuss the accuracy of the themes derived regarding the core components to be included in mHealth. A graphic recording artist visually captured key ideas from the event. A subset of the participants also completed a web-based satisfaction survey, and responses indicated that the community engagement event was generally well received. Conclusions: Results from this study have provided the necessary foundation to progress in intervention development. The next step of this multiphased project is to build an innovative and accessible mHealth intervention prototype that is based on the identified core components and is grounded in an established conceptual framework for co-design of mHealth.

Survivors of pediatric cancer are at risk for late effects and require risk-adapted long-term follow-up (LTFU) care. Yet less than 50% of survivors attend LTFU care. This study aimed to identify barriers and enablers of engaging with LTFU care as perceived by Canadian survivors of pediatric cancer and healthcare providers (HCPs). Survivors (n = 108) and HCPs (n = 20) completed surveys assessing barriers and enablers to attending LTFU care, summarized using descriptive statistics. Participants were invited to participate in survivor focus groups (n = 22) or HCP semi-structured interviews (n = 7). These were analyzed using reflexive thematic analysis and the Capability, Opportunity, and Motivation for Behaviour Change (COM-B) model, which explores how an individual’s capability, opportunity, and motivation influence a target behaviour. Structural barriers, transitioning from pediatric to adult care, and time constraints were highlighted as barriers that affect survivors’ physical opportunity to engage in LTFU care. Accessibility, financial support, HCPs and family support, and community resources were highlighted as enablers that better survivors’ physical and social opportunity to engage in LTFU care. In conclusion, Canadian survivors of pediatric cancer highlighted barriers that limited their physical opportunity to attend LTFU care, while factors that enhanced their physical and social opportunities facilitated greater engagement with LTFU care.

Survivors of childhood cancer face reduced fertility, which can be a significant cause for concern. Our study aimed to assess the prevalence of fertility-related concerns and identify associated factors. Self-report data were collected with the Long-Term Survivor Questionnaire at the Alberta Children’s Hospital’s Long-Term Survivor Clinic (LTSC) between January 2021 and September 2023. Eligible participants were diagnosed before the age of 21 years, ≥2 years off therapy, and ≥13 years old. We analyzed fertility-related concerns cross-sectionally for the whole sample and longitudinally for a subsample of participants that completed three questionnaires. We included N = 311 survivors (49.2% female; mean age = 22.7 years, range = 13.9–42.1; mean time since diagnosis = 14.5 years, range = 2.7–38.4), of whom 21.2% reported fertility-related concerns. Those with additional health concerns and those who were sexually active were more likely to report fertility-related concerns, whereas lymphoma survivors were least likely to report concerns. In the subsample who completed three questionnaires (n = 80), 30% reported having concerns at least once, whereas 9% expressed persistent concerns. Fertility-related concerns are highly prevalent among young survivors of childhood cancer and warrant attention from healthcare professionals. Services that systematically address fertility-related concerns throughout long-term follow-up are urgently needed. These services should provide a space to discuss concerns, provide education, and initiate fertility consultations if desired.

Background: Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face unique challenges during and after treatment, which have implications for improving cancer care. However, AYA cancer research is limited by the under‐representation of those who identify as Indigenous, racialized, 2S/LGBTQIA+, and those living with disabilities. The aim of this project was to explore lived experiences and identify barriers and enablers to engagement, to inform strategies that facilitate the inclusion of under‐represented AYAs in cancer research. Methods: Using a community‐based partnership research (CBPR) approach, under‐represented AYAs diagnosed with cancer, along with non‐patient advocates who serve this population, were recruited through social media, snowball, and convenience sampling. Semi‐structured interviews were conducted virtually through Zoom and analyzed using reflexive thematic analysis. Analyses were informed by collaborations with a patient partner and member‐checking feedback. Results: Interviews were conducted with AYAs ( n = 17) and non‐patient advocates ( n = 2). Analyses generated three themes: (1) representation leads to empowerment, (2) person‐centered approaches are a prerequisite to building connections, and (3) structural contexts influence the impact of research. Discussion: Our findings inform inclusive strategies for future studies to ensure the voices of all AYAs with cancer are represented in research. This study also highlights the importance of CBPR and the positive impact of knowledge derived from lived experiences in shaping research processes and outcomes.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Survivors of childhood cancer are at risk of medical, psychological, and social late effects. To screen for their risks, receipt of consistent, cancer-specific follow-up care is crucial. However, <50% of survivors attend their aftercare, and only 35% of them recognize that they could have a serious health problem. The use of mobile health (mHealth) is a promising form of intervention to educate, connect, and empower survivors of childhood cancer on the importance of follow-up care. Objective: This study aimed to use co-design to identify the priority components to include in an mHealth intervention with young adult (aged between 18 and 39 years) survivors of childhood cancer and health care providers. Methods: This study was conducted between January and November 2022 in Canada and used patient-oriented research methods. Participants were recruited through local or provincial long-term follow-up clinics, using convenience sampling from patient partners who assisted in recruiting survivors across geographical areas in western, central, and eastern Canada, and social media outreach (X, formally known as Twitter; Facebook; and Instagram). Qualitative descriptive data (focus group interviews) from survivors of childhood cancer and health care providers (individual interviews) were gathered. We analyzed the collected data using reflexive thematic analysis and verified it through member checking techniques through an online community engagement event. Results: We conducted with patient partners 5 online (Zoom) focus groups with 22 survivors of childhood cancer (mean age 29.19, SD 4.78 y). We conducted individual telephone interviews with 7 health care providers. Participants identified five priority areas to be included in an mHealth intervention: (1) connections, (2) education and information, (3) engagement, (4) personalization, and (5) resources. Results were shared with and validated by survivors of childhood cancer, their families, health care providers, and academic researchers as part of a community engagement event. Small and large group discussions were facilitated to allow participants to review and discuss the accuracy of the themes derived regarding the core components to be included in mHealth. A graphic recording artist visually captured key ideas from the event. A subset of the participants also completed a web-based satisfaction survey, and responses indicated that the community engagement event was generally well received. Conclusions: Results from this study have provided the necessary foundation to progress in intervention development. The next step of this multiphased project is to build an innovative and accessible mHealth intervention prototype that is based on the identified core components and is grounded in an established conceptual framework for co-design of mHealth.

Introduction: Childhood cancer survivors (CCS) are at lifelong risk for late adverse health outcomes. Healthy behaviors, including physical activity, substance avoidance, adequate sleep, and sun protection, are critical to mitigating these risks. Yet, data on their prevalence and determinants in this population remain limited. This study aims to describe health behaviors among adolescent and young adult (AYA) CCS in Alberta, Canada, compare them with population‐based controls, and identify associated factors for suboptimal health behaviors. Methods: This is a longitudinal cohort study of 312 CCS aged ≥ 11 years enrolled in the Long‐Term Survivor Clinic at the Alberta Children's Hospital between July 2021 and July 2025. Self‐reported questionnaires captured health behavior outcomes and covariates. Comparisons were made with Canadian Community Health Survey (CCHS) controls. Risk factors were determined using Bayesian analyses. Results: Among 312 participants (median age 22.1 years [interquartile range 8.78]; 50.6% female) at baseline, 31% did not meet physical activity recommendations, 13% reported current tobacco use, 29% reported current cannabis use, 0.1% reported poor sleep quality, and 47% reported only sometimes or rarely using sunscreen, with 14% never using sunscreen. Only 5.8% reported ever using artificial tanning devices. Compared with controls, CCS had higher rates of insufficient physical activity and e‐cigarette use but lower rates of alcohol and medicinal cannabis use. Older age predicted artificial tanning, while male sex was associated with tobacco use and lower sunscreen adherence. Treatment intensity was not associated with any of the health behaviors. Conclusion: In this study, age and sex rather than treatment intensity predicted health behaviors. Emerging behaviors, such as e‐cigarette and medicinal cannabis use, highlight gaps in current survivorship care and the need for standardized counseling frameworks. Overall, the integration of routine health behavior assessments and targeted interventions addressing these behaviors and associated factors is warranted to optimize long‐term AYA survivorship outcomes.