Seed Grant Profile
Health Information Technology (HIT) to Improve Education and Transition in Adolescent and Young Adult (AYA) Survivors of Childhood Cancer
Long-term survival for pediatric cancer has increased to nearly 80%. With increasing incidence and decreased mortality from childhood cancer, has come a growing population of young adult survivors of childhood cancer at increased risk for health problems and early mortality. Cancer survivor programs exist to detect late effects of cancer therapy at an early stage through education and surveillance, allowing for timely medical treatment, improved quality of life and decreased complication-related healthcare costs. Unfortunately, young adult survivors often get lost to survivorship follow-up in the transition from pediatric to adult-based care, and often have poorer understanding of the medical risks compared to their parents. This project, a collaboration between researchers at the Aflac Cancer Center at Children's Healthcare of Atlanta and Georgia Tech Research Institute, aims to create a fun and dynamic website for young adult survivors of childhood cancer to ultimately improve health-related education and medical adherence of adolescents and young adults. This pilot study will be divided into three parts. In the first part of the study information will be gathered for website development through focus groups (Part 1 - Focus Groups). Information obtained from the focus groups will guide website development (Part 2 - Website Development). In the third part of the study (Part 3 -Pilot Utilization), patients participating in the focus groups will then test the developed website, and pre- and post- use surveys will measure website utilization and patient satisfaction.
Investigators: Karen Wasilewski-Masker (Emory University/Children's Healthcare of Atlanta), Leanne West (Georgia Tech Research Institute) and Jeff Jo (Georgia Tech Research Institute)