Division of General Internal Medicine, Johns Hopkins University, Baltimore, MD, USA.
Department of Education and Health Services, Lehigh University, Bethlehem, PA, USA.
J Racial Ethn Health Disparities. 2019 Dec;6(6):1233-1243. doi: 10.1007/s40615-019-00625-5. Epub 2019 Aug 13.
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.
本定性研究分析了患有镰状细胞病（SCD）的患者对是否服用羟基脲（HU）的决策过程的看法，以及医生沟通在患者决策过程中的作用。
2015 年 10 月至 2016 年 7 月，我们对 20 名 SCD 患者进行了半结构式访谈，访谈内容进行了录音和转录。参与者年龄≥18 岁，为城市成人镰状细胞中心的患者，能够提供知情同意书，并且会说英语。我们迭代开发了代码，并使用主题分析来组织关键主题。
大多数参与者为女性（65%），中年（M=44，SD=12.2），55%的人平均接受 HU 治疗 10.4 年（SD=4.7）。参与者描述了影响他们 HU 治疗决策的 3 个关键因素：（1）生活方式，（2）健康状况，（3）HU 特性。关于提供者沟通和 HU 治疗决策出现了 4 个主题：（1）提供者的建议，（2）共同决策，（3）“挣扎”，（4）感觉未被听取。
参与共同决策的提供者使参与者能够决定是否开始 HU 治疗。那些觉得他们的提供者没有听取他们的担忧的参与者，就会不再接受 HU 治疗。在与患有 SCD 的患者讨论 HU 时，提供者必须了解影响患者决策的多方面因素，使患者能够参与此类讨论。需要进一步研究了解 SCD 患者共同决策的作用，以改善 SCD 的管理。
