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Background: Approximately 82% of children with childhood cancer survive more than five years after diagnosis. Living as a cancer survivor elicits a new reality that can include psychosocial impacts. These psychosocial impacts interact collectively, especially regarding reassimilation, and are rarely explored. Objective: To explore the psychosocial impacts of surviving childhood cancer and reassimilation back into society in young adult survivors of childhood cancer. Methodology: Individual in-depth semi-structured interviews were conducted with childhood cancer survivors and explored psychosocial aspects associated with returning to work, school, and social environments after remission. Interpretive phenomenological analysis was conducted once interviews were manually transcribed. A group interview with survivors was held to discuss the study's findings and interpretation. Results: Individual interviews and the group interview revealed three major themes: outlook on reassimilating, outlook on coping, and outlook on cancer. Conclusions: This work is a first step to understanding how survivors' personal outlook on coping and healthcare system barriers play influential roles in reassimilation following cancer treatment. Survivors expressed the need for reliable survivorship information and improved communication with healthcare providers regarding what to expect, so they could feel prepared for life post-cancer. These aspects need to be explored more deeply through other qualitative studies.
RESUMO
BACKGROUND: Childhood cancer treatment while often curative, leads to elevated risks of morbidity and mortality. Survivors require lifelong periodic surveillance for late effects of treatment, yet adherence to guideline-recommended tests is suboptimal. We created ONLOOP to provide adult survivors of childhood cancer with detailed health information, including summaries of their childhood cancer treatment and recommended surveillance tests for early detection of cardiomyopathy, breast cancer, and/or colorectal cancer, with personalized reminders over time. METHODS: This is an individually randomized, registry-based pragmatic trial with an embedded process and economic evaluation to understand ONLOOP's impact and whether it can be readily implemented at scale. All adult survivors of childhood cancer in Ontario overdue for guideline-recommended tests will be randomly assigned to one of two arms: (1) intervention or (2) delayed intervention. A letter of information and invitation will detail the ONLOOP program. Those who sign up will receive a personalized toolkit and a screening reminder 6 months later. With the participants' consent, ONLOOP will also send their primary care clinician a letter detailing the recommended tests and a reminder 6 months later. The primary outcome will be the proportion of survivors who complete one or more of the guideline-recommended cardiac, breast, or colon surveillance tests during the 12 months after randomization. Data will be obtained from administrative databases. The intent-to-treat principle will be followed. Based on our analyses of administrative data, we anticipate allocating at least 862 individuals to each trial arm, providing 90% power to detect an absolute increase of 6% in targeted surveillance tests completed. We will interview childhood cancer survivors and family physicians in an embedded process evaluation to examine why and how ONLOOP achieved success or failed. A cost-effectiveness evaluation will be performed. DISCUSSION: The results of this study will determine if ONLOOP is effective at helping adult survivors of childhood cancer complete their recommended surveillance tests. This study will also inform ongoing provincial programs for this high-risk population. TRIAL REGISTRATION: ClinicalTrials.gov NCT05832138.