Outcome of Hydroxyurea Use in SCD and Evaluation of Patients' Perception and Experience in Nigeria.
Outcome of Hydroxyurea Use in SCD and Evaluation of Patients' Perception and Experience in Nigeria.
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DOI：
10.3389/fgene.2022.826132
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发表时间：
2022
影响因子：
3.7
通讯作者：
Nnodu OE
中科院分区：
文献类型：
--
作者：
Chianumba RI;Ofakunrin AOD;Morrice J;Olanrewaju O;Oniyangi O;Kuliya-Gwarzo A;Nnebe-Agumadu U;Isa HA;Nnodu OE
简介：已证明，由于羟基脲（HU）可改善治疗结局，因此对镰状细胞病（SCD）的管理有益。然而，尽管HU的益处，但其在尼日利亚的SCD患者中的吸收仍然很低。 目的：本研究旨在评估尼日利亚正在使用或曾经使用HU的SCD患者的感知和经验，从而告知和促进其使用。 方法学：在378名年龄1-53岁的SCD患者中进行了一项多中心、横断面研究，这些患者作为HU使用者入组了Sickle Pan African Research Consortium（SPARCO）登记研究。SPARCO项目由美国国立卫生研究院（NIH）资助，旨在建立镰状细胞病（SCD）登记处，加强技能并计划在三个非洲国家进行研究。尼日利亚SPARCO登记处在本报告时有6453名SCD患者，其中<15%的患者接受HU治疗。获得了有关社会人口统计数据、对HU使用的看法和经验的数据，并使用描述性统计进行了分析。 结果：在378名参与者中，339名（89.7%）正在使用HU，而39名（10.3%）在研究时已停止使用HU。281人（74.3%）认为HU昂贵，而194人（51.3%）报告使用HU时无副作用或副作用极小。在停用HU的患者中，成本（59%）和可用性（51.3%）是停药的最常见原因。此外，347例（92.5%）疼痛危象减少，173例（84.8%）输血需求减少，145例（86.3%）PCV改善，318例（84.6%）住院次数减少。最后，该研究还显示，322名（85.2%）受访者会向其他患者推荐该药物，而14名受访者（3.7%）不会。本研究未采集平均红细胞体积（MCV）和胎儿血红蛋白（HbF）水平，可能会改善结果。 结论：这项研究表明，大多数SCD患者对HU的使用有良好的认知和经验，而少数患者主要由于成本和可用性而不得不停止用药。可以利用基于患者的宣传来提高HU的使用率，同时需要做出更多努力，以确保其易于获得和负担得起。
Introduction: Hydroxyurea (HU) has been shown to be beneficial in the management of sickle cell disease (SCD) as it improves treatment outcomes. However, despite the benefits of HU, its uptake among SCD patients in Nigeria remains low. Objective: This study aimed to assess the perception and experience of patients with SCD in Nigeria who are using or had used HU, thereby informing and promoting its use. Methodology: A multi-centre, cross-sectional study was conducted among 378 SCD patients aged 1–53 years who have enrolled on Sickle Pan African Research Consortium (SPARCO) registry as HU users. The SPARCO project was funded by the National Institutes of Health (NIH) to establish a sickle cell disease (SCD) registry, strengthen skills and plan research in three African countries. The Nigerian SPARCO registry had 6453 SCD patients at the time of this report with <15% of this population on HU. Data on sociodemographics, perception and experience about HU use were obtained and analysed using descriptive statistics. Findings: Out of the 378 participants, 339 (89.7%) were using HU while 39 (10.3%) had stopped using HU at the time of the study. 281 (74.3%) found HU expensive, while 194 (51.3%) reported none to minimal side effects while using HU. Among patients that stopped HU, cost (59%) and availability (51.3%) were the commonest reasons for discontinuing the drug. Furthermore, 347 (92.5%) had fewer pain crises, 173 (84.8%) had a fewer need for blood transfusion, 145 (86.3%) had improved PCV and 318 (84.6%) had fewer hospital admissions. Finally, the study also showed that 322 (85.2%) respondents would recommend the drug to other patients, whereas 14 respondents (3.7%) would not. Mean corpuscular volume (MCV) and fetal hemoglobin (HbF) levels were not collected in this study and may have improved findings. Conclusion: This study showed that the majority of the SCD patients had good perception and experience with the use of HU while a few had to stop the medication mostly on account of cost and availability. Patients’ based advocacy could be leveraged to improve HU uptake while more efforts are needed to ensure that it is readily available and affordable.