Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease - Summary - MDSpire

Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease

  • By

  • Andrew M. Heitzer

  • Zachary Wooten

  • Guangjin Luo

  • Marsha Treadwell

  • Allison A. King

  • Victor R. Gordeuk

  • Nirmish Shah

  • Christina M. Abrams

  • Sarah McCuskee

  • Siera Gollan

  • Jennifer Longoria

  • Jane S. Hankins

  • Sickle Cell Disease Implementation Consortium

  • May 6, 2026

  • 0 min

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Objective:

To assess changes in self-reported hydroxyurea use and adherence over four years and examine the influence of healthcare system, socioeconomic, and patient-related factors on these changes.

Key Findings:
  • Less than half of patients with HbSS/HbSb0-thalassemia use hydroxyurea, and among users, adherence is below 50%.
  • Adherence to hydroxyurea is associated with negative outcomes, including increased hospitalizations and lower health-related quality of life.
  • Younger adults (ages 18-24) may experience the greatest decline in adherence over time, which correlates with negative health outcomes.
Interpretation:

Hydroxyurea adherence is critically low among SCD patients, influenced by healthcare system, socioeconomic, and patient-related factors, necessitating targeted interventions such as education and support programs.

Limitations:
  • The study primarily focused on self-reported data, which may be subject to bias and affect the reliability of adherence measures.
  • Most adherence barriers studied were in pediatric populations, limiting generalizability to adults.
Conclusion:

Improving hydroxyurea adherence in SCD patients is essential for better health outcomes, highlighting the need for multifaceted interventions that address identified barriers.

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