Clinical Trials Logo

Clinical Trial 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 little is known 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, for pediatric cancer survivors and their caregivers. The researchers will develop a standardized intervention and training for the SurvivorLink trial, followed by conducting a Hybrid Type 1 effectiveness-implementation, clustered randomized, waitlist control trial to evaluate the impact of SurvivorLink on pediatric cancer patients' one year follow-up visits and completion of screening tests. The study will also assess the impact of SurvivorLink on caregiver's patient activation, survivor's and caregiver's quality of life, and self-efficacy to manage a chronic condition. 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.


Clinical Trial Description

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. This study will use a Hybrid Type 1 effectiveness-implementation, clustered randomized, waitlist control design to evaluate the impact of SurvivorLink on patient health behavior and quality of life outcomes and understand its delivery among 20 pediatric cancer survivor clinics. The researchers will test the effectiveness of SurvivorLink on 1 year follow-up and completed screenings through a clustered randomized waitlist-control trial: ten clinics will administer the intervention to study participants and the other ten clinics will be a wait-list control group where study participants receive usual care. The study will evaluate the impact of SurvivorLink on patient survivor care visit attendance and risk-based surveillance tests, caregiver's patient activation, survivor's and caregiver's quality of life and self-efficacy to manage a chronic condition. 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. ;


Study Design


Related Conditions & MeSH terms


NCT number NCT03543852
Study type Interventional
Source Emory University
Contact Cam Escoffery, PhD
Phone 404-727-4701
Email cescoff@emory.edu
Status Recruiting
Phase N/A
Start date June 14, 2021
Completion date August 2024

See also
  Status Clinical Trial Phase
Enrolling by invitation NCT04202094 - Fertility in Young Adults Who Did (Not) Store Testicular Tissue Before a Treatment Leading to Fertility Problems N/A
Recruiting NCT03336931 - PRecISion Medicine for Children With Cancer
Not yet recruiting NCT05048771 - Fertility and Temporality in Pediatric Oncology
Completed NCT05982379 - Motivation Program for Children With Cancer N/A
Completed NCT04066218 - Sexual Function Screening in Childhood Cancer Survivors
Completed NCT03934060 - Strength Training and ADLs in Childhood Leukemia and Lymphoma Patients N/A
Active, not recruiting NCT03938324 - Peer i-Coaching for Activated Self-Management Optimization in Adolescents and Young Adults With Chronic Conditions N/A
Active, not recruiting NCT04032743 - Risk Factors and Treatment Outcome of Oncology Children Hospitalized in the Intensive Care Unit Due to Sepsis
Recruiting NCT04328350 - Social Experiences of Adolescents and Young Adults With Cancer
Not yet recruiting NCT05457153 - Technology-Based Well-Being Process Program (WEBEPROP) for Children and Adolescents in Palliative Care N/A
Recruiting NCT05641961 - Mobile App to Help Survivors of Childhood Cancer Navigate Long-Term Follow-Up Care N/A
Completed NCT06179914 - Resilience Models in Adolescence and Youth With Cancer in Taiwan
Completed NCT03951246 - Cognitive and Motor Training in Pediatric Posterior Fossa Tumor Survivors N/A
Not yet recruiting NCT04902313 - Cultivating Resilience in Oncology Practice N/A
Completed NCT03160768 - Feasibility of Isolating P16 Expression
Withdrawn NCT02130934 - Cardiac 3D MRI in Pediatric Cancer Patients N/A
Completed NCT02216604 - Exercise in Pediatric Cancer Patient Undergoing Anti-Cancer Treatment N/A
Recruiting NCT03852758 - Green Exercise for Cancer - Creating Opportunities for Survivors N/A
Recruiting NCT06205251 - Diaphragm Structure and Function in Childhood Cancer Survivors N/A
Recruiting NCT06053268 - Mindfulness Interventions to Improve Health Activation, Coping, and Stress Among Childhood Cancer Survivors N/A