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尼日利亚镰状细胞病患者使用羟基脲进行治疗的障碍:一项横断面调查

Barriers to Therapeutic Use of Hydroxyurea for Sickle Cell Disease in Nigeria: A Cross-Sectional Survey.

作者信息

Okocha Emmanuel Chide, Gyamfi Joyce, Ryan Nessa, Babalola Oluwatoyin, Etuk Eno-Abasi, Chianumba Reuben, Nwegbu Maxwell, Isa Hezekiah, Madu Anazoeze Jude, Adegoke Samuel, Nnebe-Agumandu Uche, Brown Biobele, Peprah Emmanuel, Nnodu Obiageli E

机构信息

Haematology Department, Nnamdi Azikiwe University Teaching Hospital, Nnewi, Nigeria.

Global Health Program and Department of Social and Behavioral Sciences, NYU School of Global Public Health, New York, NY, United States.

出版信息

Front Genet. 2022 Jan 19;12:765958. doi: 10.3389/fgene.2021.765958. eCollection 2021.

DOI:10.3389/fgene.2021.765958
PMID:35126450
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8807646/
Abstract

Sickle cell disease, the inherited blood disorder characterized by anemia, severe pain and other vaso-occlusive complications, acute chest syndrome, disproportionate hospitalization, and early mortality, has significant financial, social, and psychosocial impacts and drains individuals, families, and health systems globally. Hydroxyurea could improve the health of the 300,000 individuals born each year with sickle cell disease in sub-Saharan Africa; however, challenges to adoption and adherence persist. This study assessed the barriers to therapeutic use of hydroxyurea for sickle cell disease within the Nigerian healthcare system, specifically from the level of the patient, provider, and health system. We used purposive sampling to recruit participants from 13 regions in Nigeria. A cross-sectional survey was administered to physicians ( = 70), nurses or counselors ( = 17), and patients or their caregivers ( = 33) at 13 health centers. Findings were mapped onto the appropriate Consolidated Framework for Implementation Research (CFIR) domains. This study was able to identify factors that mapped onto the inner setting, outer setting, and characteristics of individuals domains of CFIR. The majority of physicians (74.3%) prescribe hydroxyurea, and half stated hydroxyurea is the standard of care. Among clinicians, barriers included limited knowledge of the drug, as well as low self-efficacy to prescribe among physicians and to counsel among nurses; perceived side effects; perceived patient preference for traditional medicine; cost for patient and expense of accompanying laboratory monitoring; and limited availability of the drug and equipment for laboratory monitoring. Among patients and caregivers, barriers included lack of knowledge; perceived side effects; cost; religious beliefs of disease causation; and lack of pediatric formulation. Findings suggest that patient, provider, and health systems-level interventions are needed to improve hydroxyurea uptake among providers and adherence among patients with sickle cell disease in Nigeria. Interventions such as patient education, provider training, and policy change could address the disproportionate burden of sickle cell disease in sub-Saharan Africa and thus improve health equity.

摘要

镰状细胞病是一种遗传性血液疾病,其特征为贫血、剧痛及其他血管阻塞性并发症、急性胸部综合征、住院率过高和过早死亡,对全球个人、家庭和卫生系统造成了重大的经济、社会和心理影响。羟基脲可以改善撒哈拉以南非洲每年出生的30万名镰状细胞病患者的健康状况;然而,在采用和坚持使用方面的挑战依然存在。本研究评估了尼日利亚医疗系统中羟基脲治疗镰状细胞病的使用障碍,特别是患者、医护人员和卫生系统层面的障碍。我们采用目的抽样法从尼日利亚13个地区招募参与者。对13个医疗中心的医生(n = 70)、护士或咨询顾问(n = 17)以及患者或其护理人员(n = 33)进行了横断面调查。研究结果被映射到实施研究的适当综合框架(CFIR)领域。本研究能够识别出映射到CFIR内部环境、外部环境和个体特征领域的因素。大多数医生(74.3%)会开具羟基脲,半数医生表示羟基脲是标准治疗方法。在临床医生中,障碍包括对该药物的了解有限,以及医生开药和护士咨询的自我效能感较低;对副作用的认知;认为患者偏爱传统药物;患者的费用以及伴随的实验室监测费用;药物和实验室监测设备的供应有限。在患者和护理人员中,障碍包括知识缺乏;对副作用的认知;费用;对疾病病因的宗教信仰;以及缺乏儿科剂型。研究结果表明,需要在患者、医护人员和卫生系统层面进行干预,以提高尼日利亚医护人员对羟基脲的接受度以及镰状细胞病患者的依从性。诸如患者教育、医护人员培训和政策变革等干预措施可以解决撒哈拉以南非洲镰状细胞病负担过重的问题,从而改善健康公平性。

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Implementation science research for the scale-up of evidence-based interventions for sickle cell disease in africa: a commentary.在非洲扩大基于证据的镰状细胞病干预措施的实施科学研究:评论。
Global Health. 2021 Feb 17;17(1):20. doi: 10.1186/s12992-021-00671-x.
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Barriers to the use of hydroxyurea in the management of sickle cell disease in Nigeria.尼日利亚镰状细胞病管理中使用羟基脲的障碍。
Hemoglobin. 2019 May;43(3):188-192. doi: 10.1080/03630269.2019.1649278. Epub 2019 Aug 29.
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Hydroxyurea for Children with Sickle Cell Anemia in Sub-Saharan Africa.在撒哈拉以南非洲,用羟脲治疗镰状细胞贫血儿童。
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Improving Uptake of Hydroxyurea in Patients with Sickle Cell Disease: A Retrospective Study of a Clinic-based Change in Consenting Practices.提高镰状细胞病患者使用羟基脲的比例:基于诊所的同意实践改变的回顾性研究。
J Natl Med Assoc. 2019 Apr;111(2):169-175. doi: 10.1016/j.jnma.2018.09.004. Epub 2018 Oct 10.
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Enhancing Effect of Hydroxyurea on Hb F in Sickle Cell Disease: Ten-Year Egyptian Experience.羟基脲对镰状细胞病患者血红蛋白F的增强作用:埃及十年经验
Hemoglobin. 2017 Jul-Nov;41(4-6):267-273. doi: 10.1080/03630269.2017.1408646. Epub 2017 Dec 18.
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