Adherence to Hydroxyurea and Health-related Quality of Life in Patients With Sickle Cell Disease: An Intervention Study Using a Smartphone App (HU-Go)

Study point of contact

Katheryn King, BS
3122274000 ext 74825
[email protected]
Sherif M. Badawy, MD, MS
+1 (312) 227-4836
[email protected]

Age

12 to 25 Years

Genotypes

SS, SC

Phase

N/A

Study type

Interventional

Gender

All

Interventions

Other

Compensation

Unknown

About the study

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 PROMISĀ® 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.

participation requirements

– At least 12 years old at the time of study enrollment

– Diagnosis of sickle cell disease (hemoglobin SS or SC or S/B 0 thalassemia) confirmed
by hemoglobin electrophoresis

– On hydroxyurea

– Own or have access to a smartphone

– Be able to speak and read English

participation restrictions

– Chronic monthly transfusion support

– Any hemoglobinopathy other than sickle cell disease