PDF(Pubmed)
Abstract：
BACKGROUND: Sickle cell disease (SCD) is a prevalent genetic disorder characterized by abnormal hemoglobin formation, resulting in severe complications. Hydroxyurea (HU) therapy has demonstrated efficacy in reducing SCD-related complications; however, its utilization patterns and patient perceptions remain underexplored, particularly in the Al Ahsa region of Saudi Arabia.
OBJECTIVE: This cross-sectional study aimed to assess the prevalence of HU usage among adult patients with SCD in Al Ahsa; identify the barriers to starting, maintaining, and discontinuing HU therapy; and evaluate the patient-reported outcomes associated with its use.
METHODS: Data were collected through face-to-face surveys and medical record reviews of adult SCD patients attending outpatient clinics in the Hereditary Blood Diseases Center of Al Ahsa, Saudi Arabia, between December 2023 and March 2024. Descriptive statistics and inferential analyses were performed using SPSS version 26.
RESULTS: A total of 345 adult SCD patients were included, with a mean age of 34.12 ± 11.1 years. Most participants were male (58.6%) and unmarried (55.4%). HU utilization was reported by 57.1% of the participants, with the highest adherence observed among older age groups (p = 0.001). Significant improvements in pain severity, hospitalization rates, and quality of life were reported among HU users (p < 0.001). Common barriers to HU use included concerns about side effects, lack of medical justification, and absence of medical advice.
CONCLUSIONS: This study provides valuable insights into the utilization and perceptions of HU therapy among adults with SCD in Al Ahsa, Saudi Arabia. Addressing identified barriers and promoting patient education are crucial for optimizing therapy adherence and improving clinical outcomes in this population.
OBJECTIVE: This cross-sectional study aimed to assess the prevalence of HU usage among adult patients with SCD in Al Ahsa; identify the barriers to starting, maintaining, and discontinuing HU therapy; and evaluate the patient-reported outcomes associated with its use.
METHODS: Data were collected through face-to-face surveys and medical record reviews of adult SCD patients attending outpatient clinics in the Hereditary Blood Diseases Center of Al Ahsa, Saudi Arabia, between December 2023 and March 2024. Descriptive statistics and inferential analyses were performed using SPSS version 26.
RESULTS: A total of 345 adult SCD patients were included, with a mean age of 34.12 ± 11.1 years. Most participants were male (58.6%) and unmarried (55.4%). HU utilization was reported by 57.1% of the participants, with the highest adherence observed among older age groups (p = 0.001). Significant improvements in pain severity, hospitalization rates, and quality of life were reported among HU users (p < 0.001). Common barriers to HU use included concerns about side effects, lack of medical justification, and absence of medical advice.
CONCLUSIONS: This study provides valuable insights into the utilization and perceptions of HU therapy among adults with SCD in Al Ahsa, Saudi Arabia. Addressing identified barriers and promoting patient education are crucial for optimizing therapy adherence and improving clinical outcomes in this population.
摘要：
背景：镰状细胞病（SCD）是一种常见的遗传性疾病，其特征是血红蛋白形成异常，导致严重的并发症。羟基脲（HU）治疗已证明在减少SCD相关并发症方面有效；然而，它的利用模式和病人的感知仍然没有得到充分的探索，特别是在沙特阿拉伯的AlAhsa地区。
目的：这项横断面研究旨在评估AlAhsa成年SCD患者使用HU的患病率；确定开始的障碍，维护,并停止HU治疗；并评估患者报告的与其使用相关的结局。
方法：通过在AlAhsa遗传性血液病中心门诊就诊的成年SCD患者的面对面调查和病历回顾收集数据，沙特阿拉伯,2023年12月至2024年3月。使用SPSS版本26进行描述性统计和推断分析。
结果：共纳入345例成人SCD患者，平均年龄34.12±11.1岁。大多数参与者是男性（58.6%）和未婚（55.4%）。57.1%的参与者报告了HU利用率，在年龄较大的年龄组中观察到最高的依从性（p=0.001）。疼痛严重程度显著改善，住院率，HU使用者的生活质量报告（p<0.001）。HU使用的常见障碍包括对副作用的担忧，缺乏医疗理由，缺乏医疗建议。
结论：这项研究为AlAhsa患有SCD的成年人对HU治疗的利用和看法提供了有价值的见解，沙特阿拉伯。解决已发现的障碍和促进患者教育对于优化该人群的治疗依从性和改善临床结果至关重要。
目的：这项横断面研究旨在评估AlAhsa成年SCD患者使用HU的患病率；确定开始的障碍，维护,并停止HU治疗；并评估患者报告的与其使用相关的结局。
方法：通过在AlAhsa遗传性血液病中心门诊就诊的成年SCD患者的面对面调查和病历回顾收集数据，沙特阿拉伯,2023年12月至2024年3月。使用SPSS版本26进行描述性统计和推断分析。
结果：共纳入345例成人SCD患者，平均年龄34.12±11.1岁。大多数参与者是男性（58.6%）和未婚（55.4%）。57.1%的参与者报告了HU利用率，在年龄较大的年龄组中观察到最高的依从性（p=0.001）。疼痛严重程度显著改善，住院率，HU使用者的生活质量报告（p<0.001）。HU使用的常见障碍包括对副作用的担忧，缺乏医疗理由，缺乏医疗建议。
结论：这项研究为AlAhsa患有SCD的成年人对HU治疗的利用和看法提供了有价值的见解，沙特阿拉伯。解决已发现的障碍和促进患者教育对于优化该人群的治疗依从性和改善临床结果至关重要。
