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 we still know little 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 for pediatric cancer survivors and their caregivers. 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.

SurvivorLink LogoThis 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.

SurvivorLink™ has been designed to increase awareness and knowledge about the life-long healthcare needs of pediatric cancer survivors, and increase communication about the specific healthcare needs of individual survivors between survivor and family, cancer survivor team, primary care provider, and healthcare subspecialists. Within SurvivorLink, caregivers and adolescent pediatric cancer patients can:

  1. Learn about your Survivor's long-term healthcare needs,
  2. Store your Survivor's Survivor Healthcare Plan (SHP) and other healthcare documents, and
  3. Share your documents with your primary and specialty healthcare providers.

Dr. Cam Escoffery, a behavioral/implementation scientist at RSPH, is PI of the study. Dr. Ann Mertens, PhD, Emory University School of Medicine and Children’s Healthcare of Atlanta, is a Co-PI. Findings from this study will increase the knowledge around adoption of evidence-based interventions for survivorship care nationally and can inform future dissemination of the SurvivorLink intervention.