Background: 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.
Methods: We used purposive sampling to recruit participants from 13 regions in Nigeria. A cross-sectional survey was administered to physicians (n = 70), nurses or counselors (n = 17), and patients or their caregivers (n = 33) at 13 health centers. Findings were mapped onto the appropriate Consolidated Framework for Implementation Research (CFIR) domains.
Results: 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.
Conclusions: 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.
背景:镰状细胞病是一种遗传性血液疾病,其特征为贫血、严重疼痛和其他血管闭塞性并发症、急性胸部综合征、不成比例的住院率以及早期死亡率,在全球范围内对个人、家庭和卫生系统产生重大的经济、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30万镰状细胞病患者的健康状况;然而,其使用和依从性方面的挑战仍然存在。本研究评估了尼日利亚医疗保健系统内镰状细胞病使用羟基脲治疗的障碍,特别是从患者、医疗服务提供者和卫生系统层面进行评估。
方法:我们采用目的抽样从尼日利亚的13个地区招募参与者。对13个卫生中心的医生(n = 70)、护士或咨询师(n = 17)以及患者或其照顾者(n = 33)进行了横断面调查。研究结果被映射到适当的实施研究综合框架(CFIR)领域。
结果:本研究能够确定映射到CFIR的内部环境、外部环境和个体特征领域的因素。大多数医生(74.3%)会开具羟基脲处方,且有一半的医生表示羟基脲是标准治疗方法。在临床医生中,障碍包括对药物的了解有限,医生开药和护士提供咨询的自我效能感低;感知到的副作用;认为患者偏好传统医学;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可获取性有限。在患者和照顾者中,障碍包括缺乏了解;感知到的副作用;费用;对疾病成因的宗教信仰;以及缺乏儿童配方。
结论:研究结果表明,需要在患者、医疗服务提供者和卫生系统层面进行干预,以提高尼日利亚镰状细胞病患者中医疗服务提供者对羟基脲的使用以及患者的依从性。诸如患者教育、医疗服务提供者培训和政策改变等干预措施可以解决撒哈拉以南非洲镰状细胞病不成比例的负担,从而提高健康公平性。