Skip to main content
An official website of the United States government
Grant Details

Grant Number: 5R01CA218389-05 Interpret this number
Primary Investigator: Escoffery, Ngoc-Cam
Organization: Emory University
Project Title: SURVIVORLINK: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers.
Fiscal Year: 2022


Summary 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 clinics.


Understanding caregivers' decision to vaccinate childhood cancer survivors against COVID-19.
Authors: Ilic A. , Haardoerfer R. , Michel G. , Escoffery C. , Mertens A.C. , Marchak J.G. .
Source: Cancer medicine, 2023 Dec; 12(23), p. 21354-21363.
EPub date: 2023-11-08.
PMID: 37937725
Related Citations

Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: A fishbone analysis.
Authors: Krauss V. , Mertens A. , Marchak J.G. , Haardörfer R. , Meacham L.R. , Lewis R.W. , Wright R. , Adisa O. , Kommajosula A. , Escoffery C. .
Source: Pediatric blood & cancer, 2023 Aug; 70(8), p. e30480.
EPub date: 2023-06-03.
PMID: 37269530
Related Citations

A scoping review of outer context constructs in dissemination and implementation science theories, models, and frameworks.
Authors: Escoffery C. , Sekar S. , Allen C.G. , Madrigal L. , Haardoerfer R. , Mertens A. .
Source: Translational behavioral medicine, 2023-05-13; 13(5), p. 327-337.
PMID: 36694938
Related Citations

Using formative evaluation to plan for electronic psychosocial screening in pediatric oncology.
Authors: Gilleland Marchak J. , Halpin S.N. , Escoffery C. , Owolabi S. , Mertens A.C. , Wasilewski-Masker K. .
Source: Psycho-oncology, 2021 Feb; 30(2), p. 202-211.
EPub date: 2020-10-20.
PMID: 32931620
Related Citations

User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.
Authors: Marchak J.G. , Cherven B. , Williamson Lewis R. , Edwards P. , Meacham L.R. , Palgon M. , Escoffery C. , Mertens A.C. .
Source: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2020 Aug; 28(8), p. 3905-3914.
EPub date: 2019-12-18.
PMID: 31853699
Related Citations

Scalability of cancer SurvivorLink™: A cluster randomized trial among pediatric cancer clinics.
Authors: Escoffery C. , Gilleland Marchak J. , Haardörfer R. , Meacham L. , Williamson Lewis R. , Udelson H. , Edwards P. , Mertens A.C. .
Source: Contemporary clinical trials, 2019 Oct; 85, p. 105819.
EPub date: 2019-08-07.
PMID: 31400518
Related Citations

Back to Top