Interventions for caregivers and pediatric cancer survivors are needed to improve patient-centered care,
minimize late effects and promote overall well-being. The purpose of this research is to assess the impact of
the SurvivorLink system on implementation and adherence to cancer care and late effects visits/screening.
This research projects proposes to develop a standardized process by which to implement SurvivorLink, a
personal electronic health record and education system, designed to promote survivor care, within pediatric
cancer clinics. We will utilize a hybrid 1 effectiveness-implementation, clustered randomized, waitlist control
design to evaluate its effectiveness across sites and among pediatric adolescent cancer survivors and their
caregivers. The examination of the use and scalability of SurvivorLink would facilitate the adoption of evidence-
based guidelines implementation for the surveillance of late effects among pediatric cancer centers at the
national level. The specific aims for this research are to: Aim 1) develop a standardized intervention and
training for the SurvivorLink trial; Aim 2a) evaluate the impact of SurvivorLink through a hybrid 1 effectiveness-
implementation, clustered randomized waitlist control trial of pediatric cancer clinics on patient survivor care
visit attendance and risk-based surveillance, caregiver’s patient activation, survivor’s and caregiver’s quality of
life and self-efficacy to manage a chronic condition; 2b) conduct a process evaluation of the uptake of
SurvivorLink to measure use, participation, acceptability, perceived usefulness and satisfaction among
childhood survivors and their caregivers; 3) assess the adoption and integration of SurvivorLink into the clinical
workflow, contextual facilitators and barriers to implementation, using the Consolidated Framework for
Implementation Research framework, and measure early sustainability at 1 and 2 years post implementation
through a mixed methods study; and Aim 4) assess the adoption and reach of Survivorlink among other
pediatric cancer clinics from its dissemination on the Children’s Oncology Group Network website within 1 year
of its development. This study is the first comprehensive, effectiveness-implementation study to evaluate the
impact of an electronic personal health record (with care plan) and education system for pediatric cancer
survivors and their caregivers. Our research will contribute to the literature about technological interventions to
impact supportive and long-term care for pediatric cancer survivors. It will also identify the optimal
organizational inner and outer setting facilitators (context) for its implementation among pediatric cancer
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