Emory Prevention Research Center

SurvivorLink™

The SurvivorLink project is a multi-year study trial to test and disseminate a patient-controlled electronic health record developed to help cancer survivors store and share important health documents across the many providers they see during their lifespan.

Summary

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, SurvivorLink, on 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 who survived cancer and best practices for implementation for pediatric cancer centers.

We have developed 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 are utilizing 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. We are examining the use and scalability of SurvivorLink to facilitate the adoption of evidence-based guidelines for the surveillance of late effects among pediatric cancer centers at the national level.

The current specific aims for this research are to:

  1. a. 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;
    b. conduct a process evaluation of the uptake of SurvivorLink to measure use, participation, acceptability, perceived usefulness and satisfaction among childhood survivors and their caregivers;
  2. 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

SurvivorLink™ has been designed to increase awareness and knowledge about the life-long healthcare needs of pediatric cancer survivors, and increase communication about those specific needs of individual survivors between the cancer survivor, their family, their cancer survivor team, their primary care provider, and their 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.

Findings from this study will increase the knowledge around the adoption of evidence-based interventions for survivorship care nationally and can inform future dissemination of the SurvivorLink intervention.

Project Staff:

Principal Investigators: Dr. Cam Escoffery and Dr. Ann Mertens
Co-Investigators: Dr. Jordan Marchak, Dr. Regine Haardoerfer, Dr. Lillian Meacham
Software Engineers: Dr. Paula Edwards, Mike Palgon, MBA
Project Coordinator: Victoria Krauss, MPH
Research Staff: Rebecca Lewis, MPH and Nia Moyer
Graduate Research Assistants: Oyinda Adisa, Robert Wright, Haley Tailor, Swathi Sekar

Project Partners:

Children’s Healthcare of Atlanta and other Children’s Oncology Group Network Clinics

Dr. Cam Escoffery, a behavioral and implementation scientist at RSPH, is the Principal Investigator of the study. Dr. Ann Mertens, a pediatric cancer survivorship researcher at Emory University School of Medicine and Children’s Healthcare of Atlanta, is the Co-Principal Investigator.

Project Dates: 2018 - 2023

Publications:

Escoffery C, Marchak JG, Haardörfer R, Meacham L, Lewis RW, Udelson H, Edwards P, Mertens AC. Scalability of cancer SurvivorLink™: A cluster randomized trial among pediatric cancer clinics. Contemporary clinical trials. 2019 Oct 1;85:105819.
Marchak JG, Cherven B, Lewis RW, Edwards P, Meacham LR, Palgon M, Escoffery C, Mertens AC. User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers. Supportive Care in Cancer. 2019 Dec 18:1-0.