Rachelle Drummond

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.

Purpose In contrast to the extensive literature on fear of cancer recurrence (FCR) experienced by adults, literature evaluating pediatric FCR has just begun to emerge. Given the rapidly expanding body of work assessing FCR in childhood and adolescence, a scoping review was conducted to synthesize existing findings. We aimed to assess (1) the characteristics and methods of this literature, (2) how pediatric FCR has been measured, and (3) the extant knowledge of FCR experienced by pediatric survivors of cancer. Methods Inclusion criteria were: (1) original reports, (2) participants diagnosed with cancer before age 18, (3) current mean age under 18, (4) FCR was explicitly measured (quantitatively) or captured (qualitatively) via survivor self-report, and (6) published in English. Exclusion criteria were: (1) case studies, and (2) grey literature. Three databases (Embase, MEDLINE, PsycINFO) and reference lists from included studies were searched. All studies were screened for inclusion by two authors and all data were extracted by a single author. Results Of 3906 identified studies, 19 were included. Studies (published 1991 – 2023) encompassed diverse geographical locations, study designs, and measurement methods. Few assessed FCR as a primary aim (n = 6, 32%). FCR was experienced by 43 – 90% of pediatric survivors. FCR was often positively associated with somatic symptoms and negatively associated with quality of life and emotional functioning. Conclusion FCR is a prevalent issue for children and adolescents. Additional evidence is needed to explore and confirm preliminary findings. Future pediatric FCR studies should aim to align with published priority research areas.

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, 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.