SurvivorLink in Improving Quality of Life in Cancer Survivors and Caregivers
Hematopoietic Malignancies
Solid Tumor
0 Years and older, Male and Female
RSPH-AFLAC4297-18 (primary)
NCI-2018-00396
IRB00101506
Summary
This trial studies how well SurvivorLink works in improving quality of life in cancer survivors and caregivers. SurvivorLink, a web-based communication tool, may help enable pediatric cancer survivors and their caregivers to learn about survivorship care, store their survivorship health plan and other important documents, and share their health plan with other providers.
Objectives
PRIMARY OBJECTIVES:
I. Evaluate the impact of SurvivorLink on patient survivor care visit and risk-based surveillance, caregiver’s patient activation, survivor’s and caregiver’s quality of life (QOL) and self-efficacy to manage a chronic condition.
II. Conduct a process evaluation of the uptake of SurvivorLink to measure use, participation, acceptability, perceived usefulness and satisfaction among childhood survivors and their caregivers.
III. Assess the adoption and integration of SurvivorLink into the clinical workflow, contextual facilitators and barriers to implementation through a mixed methods sub-study at 1 and 2 years post implementation.
IV. Assess the adoption and reach of SurvivorLink among other pediatric cancer clinics from its dissemination on the Children’s Oncology Group (COG) Network/Children's Healthcare of Atlanta (CHOA) website within 1 year of its development.
OUTLINE:
PHASE I: Development of SurvivorLink toolkit.
PHASE II: Participants are randomized into 1 of 2 arms.
ARM I: Participants use the SurvivorLink program for 1 year.
ARM II: Participants receive standard of care for 1 year and then use the SurvivorLink program for 1 year.
After completion of study, participants are followed up at 12 months.
Eligibility
- Caregivers/parents of pediatric survivors < 18, young adult survivors ages 18-21, and adolescent survivors ages 15-17
**Clinical trials are research studies that involve people. These studies test new ways to prevent, detect, diagnose, or treat diseases. People who take part in cancer clinical trials have an opportunity to contribute to scientists’ knowledge about cancer and to help in the development of improved cancer treatments. They also receive state-of-the-art care from cancer experts...
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