The Role of Patient-Physician Communication on the Use of Hydroxyurea in Adult Patients with Sickle Cell Disease

  • Sarah M. Jabour
  • Sara Beachy
  • Shayna Coburn
  • Sophie Lanzkron
  • Michelle N. EakinEmail author



This qualitative study analyzed the perspective of patients living with sickle cell disease (SCD) on their process of deciding whether to take hydroxyurea (HU), and the role of physician communication in patients’ decision-making process.


From October 2015 to July 2016, we conducted semi-structured interviews among patients with SCD (N = 20) that were audio-recorded and transcribed. Participants were ≥ 18 years old, a patient of an urban adult sickle cell center, able to provide informed consent, and English-speaking. We iteratively developed codes and used thematic analysis to organize the key themes.


Most participants were female (65%), middle aged (M = 44, SD = 12.2), and 55% were prescribed HU for an average of 10.4 (SD = 4.7) years. Participants described 3 key factors that influenced their decision regarding HU treatment: (1) lifestyle, (2) health status, and (3) HU characteristics. Four themes emerged about provider communication and HU treatment decisions: (1) provider’s advisement, (2) shared decision-making, (3) “wrestled,” and (4) not feeling heard.


Providers who engaged in shared decision–making empowered participants to decide whether to start HU treatment. Participants who felt their providers were not listening to their concerns expressed disengaging from HU treatment. During discussions about HU with patients living with SCD, providers must understand the multi-faceted aspects that impact patients’ decision and empower patients to engage in such discussions. Further research is needed to understand the role of shared decision-making among patients with SCD to improve management of SCD.


Sickle cell disease Patient-provider communication Shared decision-making, hydroxyurea 



We wish to thank the participants who participated in this study. We thank Yetunde Olagbaju for her help organizing the data collection. We thank Dr. Anne K. Monroe for her support.


This work received financial support from the National Heart, Lung, and Blood Institute R34 113438.

Compliance with Ethical Standards

Informed Consent and Patient Details Statement

All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional research committee (Johns Hopkins Institutional Review Board: IRB00073658) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

Conflict of Interest

The authors declare that they have no conflict of interest.

Supplementary material

40615_2019_625_MOESM1_ESM.docx (87 kb)
ESM 1 (DOCX 87 kb)


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Copyright information

© W. Montague Cobb-NMA Health Institute 2019

Authors and Affiliations

  • Sarah M. Jabour
    • 1
  • Sara Beachy
    • 2
  • Shayna Coburn
    • 3
    • 4
  • Sophie Lanzkron
    • 5
  • Michelle N. Eakin
    • 6
    Email author
  1. 1.Division of General Internal MedicineJohns Hopkins UniversityBaltimoreUSA
  2. 2.Department of Education and Health ServicesLehigh UniversityBethlehemUSA
  3. 3.Children’s National Health SystemWashington, D.C.USA
  4. 4.The George Washington UniversityWashington, D.C.USA
  5. 5.Division of HematologyJohns Hopkins UniversityBaltimoreUSA
  6. 6.Division of Pulmonary and Critical Care MedicineJohns Hopkins UniversityBaltimoreUSA

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