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<p>Children and adolescents with sickle cell disease (SCD) are at high risk for medical
complications, neuropsychological sequelae, and lower overall quality of life. One
target of intervention that can positively impact these outcomes is treatment adherence.
Despite the known benefits of treatment adherence for health outcomes, children with
SCD encounter several barriers that result in low overall levels of adherence and
reduction of treatment benefits. Furthermore, little is known regarding the relationship
between adherence and quality of life for this pediatric population. As such, two
studies were conducted in order to (a) examine the relationship between treatment
adherence and quality of life among youth with SCD, and (b) examine the feasibility,
acceptability, and preliminary efficacy of a novel mobile health intervention to improve
adherence among youth with SCD. For the first study, 46 children and adolescents with
SCD and a caregiver were recruited. Results indicated that participants with good
adherence had significantly higher parent-reported quality of life than participants
with poor adherence. In contrast, based on child self-report, participants did not
differ across quality of life domains. Subsequently, 43 participants were recruited
to participate in the pilot intervention study, the Intensive Training Program (ITP).
The intervention was conducted in two phases: Phase I recruited participants receiving
iron chelation therapy to reduce the risk of iron overload associated with chronic
red blood transfusions (n=11); Phase II broadened the scope of participants to those
prescribed hydroxyurea (HU; n=32), a once daily oral medication. Results indicated
that patients and their caregivers endorsed high levels of acceptance, ease of use,
and satisfaction with mobile health technology. In addition, participants encountered
several technological issues that limited access and resulted in poor compliance with
the ITP for some participants early on in the study. Despite this, participants demonstrated
significant increases in medication possession ratio (MPR) based on pharmacy refill
as well as sustained improvements in disease knowledge. Adherent participants demonstrated
significant decreases in outcomes related to caregiver burden as well as significantly
lower pain impact when compared to non-adherent youth. In addition, children who were
adherent reported quality of life and overall SCD-related functioning at a clinically-significant
higher level when compared to those who were non-adherent. Implications for future
research and application to clinical care are discussed.</p>
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