The Role of Patient-Physician Communication on the Use of Hydroxyurea in Adult Patients with Sickle Cell Disease
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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.
KeywordsSickle 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.
- 2.Brousseau DC, Panepinto JA, Nimmer M, Hoffmann RG. The number of people with sickle-cell disease in the United States: national and state estimates. Am J Hematol. 2010;85:77–8.Google Scholar
- 4.Centers for Disease Control and Prevention. Complications and treatment of sickle cell disease. 2017. https://www.cdc.gov/ncbddd/sicklecell/treatments.html. Accessed 16 May 2019.
- 11.National Heart, Lung, and Blood Institute. The management of sickle cell disease. NIH publication. 2002;55.Google Scholar
- 18.Badawy SM, Thompson AA, Lai JS, Penedo FJ, Rychlik K, Liem RI. Adherence to hydroxyurea, health-related quality of life domains, and patients’ perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults. Health Qual Life Outcomes. 2017;15:136.CrossRefGoogle Scholar
- 26.Patton M. Qualitative evaluation and research methods, vol. 3. Sage; 2002.Google Scholar
- 31.Ross D, Bakshi N, Khemani K, Sinha C, Loewenstein G, Krishnamurti L. What are the expectations of patients in decision making process of disease modifying therapies for sickle cell disease: do they care about shared decision making? Blood. 2016;128:5968.Google Scholar
- 32.Elander J, Beach MC, Haywood C Jr. Respect, trust, and the management of sickle cell disease pain in hospital: comparative analysis of concern-raising behaviors, preliminary model, and agenda for international collaborative research to inform practice. Ethn Health. 2011;16:405–21.CrossRefGoogle Scholar
- 40.Badawy SM, Cronin RM, Hankins J, Crosby L, DeBaun M, Thompson AA, et al. Patient-centered eHealth interventions for children, adolescents, and adults with sickle cell disease: systematic review. JMIR. 2018;20:e10940.Google Scholar
- 43.Jonassaint CR, Shah N, Jonassaint J, De Castro L. Usability and feasibility of an mHealth intervention for monitoring and managing pain symptoms in sickle cell disease: the Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART). Hemoglobin. 2015;39:162–8.CrossRefGoogle Scholar