Abstract
This project addresses three important research questions. First, adolescents and young
adults (AYA) with sickle cell disease (SCD) and their parents/caregivers will be engaged to
inform the (1) domains of health-related quality of life (HRQOL) most important to them, (2)
frequency at which they are willing to complete them, and (3) other procedures related to the
use, uptake and effect of the HU-Go app as a tool to improve hydroxyurea (HU) adherence.
Second, this study seeks to utilize novel modern mobile technology using a multi-functional
personalized platform to improve adherence to HU and measure HRQOL in youth with SCD, using
NIH-endorsed PROMIS® measures, based on a conceptual model with predefined behavioral targets
and mediators. Third, we plan to assess HRQOL changes and identify modifiable behavioral
strategies that could serve as surrogates or predictors for HU adherence. This real-time
feedback might empower self-directed changes in behavior that could improve adherence to HU.
