Department of Pediatric Hematology-Oncology-BMT, Emory University, Atlanta, Georgia, United States of America.
Aflac Cancer and Blood Disorders, Children's healthcare of Atlanta, Atlanta, Georgia, United States of America.
PLoS One. 2018 Jun 27;13(6):e0199375. doi: 10.1371/journal.pone.0199375. eCollection 2018.
Despite its efficacy, the uptake of HU in adults with sickle cell disease (SCD) is poor likely due to a combination of system, provider, and patient-related factors. We investigated attitudes of adult patients towards HU by conducting qualitative interviews with 95 adult SCD patients (age 18 to 67 years old, 71 were female). While 53% of all participants reported that they were currently taking HU, patients ranging in age 18-30 years (Group 1) were more likely to report current HU use as compared to those (Group 2) ranging in age 31-67 years (65% vs. 41% P = 0.01). Most Group 1 participants who reported currently taking HU indicated that the decision to start HU was made by a parent, though some made the decision themselves as a young adult. Group 1 participants expressed trust in the efficacy of HU as well as trust that their physician adequately shared risks and benefits for the medication. The Group 2 participants, who were not currently on HU, were skeptical that all the risks and benefits of HU were known, were concerned that the efficacy of HU was not proven, and that they were not receiving complete information about its potential side effects. Of Group 2 participants who reported currently being on HU, 25% were concerned about the side effects and efficacy of HU and reported continuing HU because of a lack of effective alternatives. These data suggest that there are significant differences by age in adult SCD patients' attitudes towards, utilization and understanding of the risks and benefits of HU.
尽管 HU 具有疗效，但成人镰状细胞病（SCD）患者对 HU 的接受程度较差，这可能是由于系统、提供者和患者相关因素的综合作用。我们通过对 95 名成年 SCD 患者（年龄 18 至 67 岁，71 名为女性）进行定性访谈，调查了成年患者对 HU 的态度。虽然所有参与者中有 53%报告正在服用 HU，但年龄在 18-30 岁的患者（第 1 组）比年龄在 31-67 岁的患者（第 2 组）更有可能报告正在使用 HU（65%比 41%，P = 0.01）。大多数报告正在服用 HU 的第 1 组参与者表示，开始服用 HU 的决定是由父母做出的，尽管有些参与者作为年轻成年人自己做出了决定。第 1 组参与者对 HU 的疗效表示信任，也相信他们的医生充分分享了药物的风险和益处。第 2 组未服用 HU 的参与者对 HU 的所有风险和益处是否已知表示怀疑，担心 HU 的疗效未经证实，他们没有收到有关其潜在副作用的完整信息。报告目前正在服用 HU 的第 2 组参与者中，有 25%对 HU 的副作用和疗效表示担忧，并表示继续服用 HU，因为缺乏有效的替代药物。这些数据表明，成人 SCD 患者对 HU 的态度、利用情况以及对其风险和益处的理解存在显著的年龄差异。
