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Background: Adult survivors of childhood cancer are at elevated risk of morbidity and mortality compared to the general population, but their adherence to lifelong periodic surveillance is suboptimal. We aimed to examine adherence to surveillance guidelines for high-yield tests and identify risk factors for nonadherence in adult survivors of childhood cancer. Methods: In this retrospective, population-based cohort study, we used health care administrative data from Ontario, Canada, to identify adult survivors of childhood cancer diagnosed between 1986 and 2014 who were at elevated risk of therapy-related colorectal cancer, breast cancer, or cardiomyopathy. Using a Poisson regression framework, we assessed longitudinal adherence and predictors of adherence to the Children's Oncology Group surveillance guideline. Results: Among 3241 survivors, 327 (10%), 234 (7%), and 3205 (99%) were at elevated risk for colorectal cancer, breast cancer, and cardiomyopathy, respectively. Within these cohorts, only 13%, 6%, and 53% were adherent to recommended surveillance as of February 2020. During a median follow-up of 7.8 years, the proportion of time spent adherent was 14% among survivors at elevated risk for colorectal cancer, 10% for breast cancer, and 43% for cardiomyopathy. Significant predictors of adherence varied across the risk groups, but higher comorbidity was associated with adherence to recommended surveillance. Interpretation: Survivors of childhood cancer in Ontario are rarely up to date for recommended surveillance tests. Tailored interventions beyond specialized clinics are needed to improve surveillance adherence. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Survivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality due to their cancer treatment. These are termed late effects. Therefore, they require lifelong, risk-tailored surveillance. However, most adult survivors of childhood cancer do not complete recommended surveillance tests such as mammograms or echocardiograms. Objective: In partnership with survivors, family physicians, and health system partners, we are designing a provincial support system for high-priority tests informed by principles of implementation science, behavioral science, and design thinking. Methods: Our multiphase process was structured as follows. Step 1 consisted of a qualitative study to explore intervention components essential to accessing surveillance tests. Step 2 comprised a workshop with childhood cancer survivors, family physicians, and health system stakeholders that used the Step 1 findings and “personas” (a series of fictional but data-informed characters) to develop and tailor the intervention for different survivor groups. Step 3 consisted of intervention prototype development, and Step 4 involved iterative user testing. Results: The qualitative study of 30 survivors and 7 family physicians found a high desire for information on surveillance for late effects. Respondents indicated that the intervention should help patients book appointments when they are due in addition to providing personalized information. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors who may experience distress upon learning of their risk for late effects. In our user-testing process, prototypes went through iterations that incorporated feedback from users regarding acceptability, usability, and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a lifelong intervention via our health system partners. Conclusions: In partnership with childhood cancer survivors, family physicians, and health system partners, we elucidated the barriers and enablers to accessing guideline-recommended surveillance tests and designed a multifaceted solution that will support survivors and their family physicians. The next step is to evaluate the intervention in a pragmatic randomized controlled trial. [ABSTRACT FROM AUTHOR]