What question did this study set out to answer?

This study aims to evaluate changes in hydroxyurea use and adherence over time and identify associated factors in patients with sickle cell disease.

May 8, 2026JAMA Network OpenOpen Access

Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease

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Cohort study examines hydroxyurea usage and adherence in patients with sickle cell disease, suggesting cognitive factors affect outcomes.

This study aims to evaluate changes in hydroxyurea use and adherence over time and identify associated factors in patients with sickle cell disease.
Longitudinal cohort study with data collected from 8 US centers.
Participants aged 15-45 with sickle cell disease completed surveys at baseline and three yearly follow-ups.
Hydroxyurea use was analyzed as a binary outcome, and adherence was measured as days taken per week.
Overall hydroxyurea use remained stable; 49.3% at baseline to 48.3% at third follow-up.
Patients with HbSS/SB0-thalassemia showed declining use with an odds ratio of 0.76 (95% CI, 0.63 to 0.91; P = .004).
Adherence declined by -0.19 days/week/year (95% CI, -0.24 to -0.14 days/week/year; P < .001), linked to cognitive difficulties.

Heitzer et al. (2026) studied this question.

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