Designing A Provincial Surveillance and Support System for Childhood Cancer Survivors

Background Survivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality because of 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. Working 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 multi-phase process was as follows: Step 1: a qualitative study to explore intervention components essential to accessing surveillance tests; Step 2: 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: intervention prototype development; and step 4: 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 in addition to providing personalized information, the intervention should help patients book appointments when they are due. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors that 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 usability and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a life-long intervention via our health system partners. Conclusion 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 multi-faceted solution that will support survivors and their family physician. The next step is to evaluate the intervention in a pragmatic randomized control trial.