SurvivorLink for Childhood Cancer

Palo Alto (17 mi)

Overseen byAnn Mertens, PhD

Age: Any Age

Sex: Any

Travel: May be covered

Time Reimbursement: Varies

Trial Phase: N/A

Waitlist Available

Sponsor: Emory University

No Placebo Group

Trial Summary

What is the purpose of this trial?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.

Eligibility Criteria

This trial is for pediatric cancer survivors who finished treatment within the past year. Participants must speak English or Spanish, have internet access, and agree to share their clinical data and survivor healthcare plan (SHP) records. Clinics should see over 100 such survivors annually, have a dedicated survivorship clinic, and be willing to partner with Emory University.

Exclusion Criteria

I am caring for a child or young adult with a terminal illness.

Treatment Details

SurvivorLink, an electronic personal health record system designed for pediatric cancer survivors and their caregivers, is being tested. The study aims to see if SurvivorLink improves follow-up care visits, screening test completion rates, caregiver engagement, quality of life measures, and self-efficacy in managing chronic conditions.

2Treatment groups

Experimental Treatment

Active Control

Group I: SurvivorLinkExperimental Treatment1 Intervention

Participants receiving treatment at a pediatric cancer survivor clinic randomized to this study arm will receive education on how to use SurvivorLink, late effects of treatment, and survivorship care through the system.

Group II: Usual careActive Control1 Intervention

Participants receiving treatment at a pediatric cancer survivor clinic randomized to the usual care study arm will receive the SurvivorLink intervention beginning at Month 12.