SurvivorLink: Scalability of an Electronic Personal Health Record

Previous research suggests that children and adolescents with cancer are at heightened risk of late effects that can occur months or years after cancer treatment, yet little is known about programs that increase their return for follow-up cancer care and late effects surveillance. This study will evaluate the impact of an electronic personal health record and education system, SurvivorLink, for pediatric cancer survivors and their caregivers. The researchers will develop a standardized intervention and training for the SurvivorLink trial, followed by conducting a Hybrid Type 1 effectiveness-implementation, clustered randomized, waitlist control trial to evaluate the impact of SurvivorLink on pediatric cancer patients' one year follow-up visits and completion of screening tests. The study will also assess the impact of SurvivorLink on caregiver's patient activation, survivor's and caregiver's quality of life, and self-efficacy to manage a chronic condition. This study will provide the evidence base about the effects of the system to improve follow-up care for children and adolescents with cancer and best practices for implementation for pediatric cancer centers.

Inclusion Criteria for Pediatric Cancer Survivor Clinics: * have a designated survivorship clinic and provide a survivor healthcare plan (SHP) to survivors seen in clinic * have \> 100 pediatric cancer survivors seen annually * be willing to become a SurvivorLink partner clinic and complete a Business Associates Agreement with Emory University * able to enroll 75 caregivers or young adult patients Inclusion Criteria for Caregivers of Survivors under 18 Years of Age, Adolescent Survivors Aged 15-17, and Survivors Aged 18-21: * pediatric cancer survivor completed treatment in past year * English or Spanish speaking * able to access the internet either with a computer or smartphone * gives permission for the clinic and study staff to use clinical data to confirm service utilization patterns * gives permission to view SHP records on SurvivorLink Exclusion Criteria for Caregivers of Survivors under 18 Years of Age, Adolescent Survivors Aged 15-17, and Survivors Aged 18-21: * survivor has a terminal illness