Survivor Link: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers
Clinical Trial Information
Trial Contact: Spinelli, Jennifer; El-Shami, Jessica; Leffin, Melissa
Aim 1: Evaluate the impact of SurvivorLinkTM on patient survivor care visit attendance and riskbased surveillance, caregiver’s patient activation, survivor’s and caregiver’s quality of life (QOL)
and self-efficacy to manage a chronic condition.
Aim 2: Conduct a process evaluation of the uptake of SurvivorLinkTM to measure use, participation, acceptability, perceived usefulness and satisfaction among adolescent childhood survivors and their caregivers.
Aim 3: Assess the adoption and integration of SurvivorLinkTM into the clinical workflow, contextual facilitators and barriers to implementation through a mixed methods sub-study at 1
and 2 years post implementation.
Aim 4: Assess the adoption and reach of SurvivorLinkTM among other pediatric cancer clinics from its dissemination on the Children’s Oncology Group (COG) Network/CHOA website within 1 year of its development.
Both male and female caregivers/parents of pediatric survivors < 18, young adult survivors ages 18-21, and adolescent survivors ages 15-17 are eligible to participate in this research.
Women, children and ethnic minorities will be included in this research. The expectation is that
the enrolled patient population will be representative of pediatric cancer survivor patients. It is
anticipated that the study population will in general reflect the racial/ethnic composition of the
overall cancer survivor patient population.
Survivors who have a terminal diagnosis will not be eligible to participate.