CLINICAL TRIAL / NCT03543852

SurvivorLink: Scalability of an Electronic Personal Health Record

Interventional
Active
NCT03543852

Eligibility Details Visit Clinicaltrials.gov

Contact Information

SurvivorLink: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers

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.

Detailed 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.

Eligibility Details

Gender
All

Age Group
15 Years and up

Accepting Healthy Volunteers
No

Inclusion Criteria for Pediatric Cancer Survivor Clinics: - have a designated survivorship clinic and provide a survivor healthcare plan (SHP) to survivors seen in clinic - have > 100 pediatric cancer survivors seen annually - be willing to become a SurvivorLink partner clinic and complete a Business Associates Agreement with Emory University - able to enroll 75 caregivers or young adult patients Inclusion Criteria for Caregivers of Survivors under 18 Years of Age and for Survivors Aged 18-22: - pediatric cancer survivor completed treatment in past year - English or Spanish speaking - able to access the internet either with a computer or smartphone - gives permission for the clinic and study staff to use clinical data to confirm service utilization patterns - gives permission to view SHP records on SurvivorLink Exclusion Criteria for Caregivers of Survivors under 18 Years of Age and for Survivors Aged 18-22: - survivor has a terminal illness