Highlighting Healthcare Disparities in Sickle Cell Disease Management in Resource-Constrained Settings: A Cross-Sectional Study in Lebanon

IF 2.3 3区医学 Q2 HEMATOLOGY

Pediatric Blood & Cancer Pub Date : 2025-08-30 DOI:10.1002/pbc.31994

Morgan Bou Zerdan, Adele Watfa, Bruna Kfoury, Jawad Hoballah, Rita El-Hachem, Lucia Ruggieri, Fedele Bonifazi, Miguel Raul Abboud, Soha Yazbeck

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Abstract

Background

Sickle cell disease (SCD) is a genetic disorder characterized by crescent-shaped red blood cells, which can result in a number of complications. SCD prevalence is higher in countries with limited resources and, in certain regions such as Lebanon, may be compounded by high consanguinity rates, posing significant challenges for both healthcare systems and patients. This study aimed to assess patient needs and the organization of SCD management centers, to identify service gaps, and enhance care.

Methods

SCD patients, caregivers, or legal representatives completed questionnaires about their experiences from diagnosis to present. Data were safely preserved for analysis. Additionally, electronic surveys regarding services, equipment, and staffing were filled out by reference staff from healthcare facilities in Lebanon, a low-resource country with a large refugee population. Qualitative thematic analysis and SPSS were used to analyze data.

Results

Among 124 participants, those living in rural areas reported significantly greater obstacles to quality care compared to urban residents (p < 0.001). Facilities unequipped for SCD care reported significantly fewer trained staff (p = 0.001), fewer beds dedicated to SCD (p = 0.003), and reduced use of infection screening tools (p = 0.033) compared to equipped centers. Patients at unequipped centers also reported lower satisfaction with communication, pain control, and psychological support (all p < 0.001), and showed less awareness of genetic counseling and SCD inheritance (p < 0.001).

Conclusion

This study reveals substantial deficiencies in SCD management in the surveyed setting. Addressing gaps in staffing, training, and resource availability is urgently required. Collaborative efforts to strengthen healthcare systems could greatly improve outcomes and ensure people with SCD obtain suitable, high-quality care.

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强调镰状细胞病管理在资源受限环境下的医疗差异：黎巴嫩的一项横断面研究

背景：镰状细胞病（SCD）是一种以新月状红细胞为特征的遗传性疾病，可导致许多并发症。SCD患病率在资源有限的国家较高，在黎巴嫩等某些地区，可能与高血亲率相结合，对医疗系统和患者都构成重大挑战。本研究旨在评估患者需求及SCD管理中心的组织，找出服务差距，并改善护理。方法：SCD患者、护理者或法定代理人填写问卷，了解他们从诊断到现在的经历。数据被安全保存以供分析。此外，关于服务、设备和人员配备的电子调查由黎巴嫩医疗机构的参考工作人员填写，黎巴嫩是一个资源匮乏、难民人口众多的国家。采用定性专题分析和SPSS软件对数据进行分析。结果：在124名参与者中，生活在农村地区的人报告说，与城市居民相比，获得高质量医疗服务的障碍明显更大（p < 0.001）。与配备SCD护理设备的中心相比，未配备SCD护理设备的设施报告说，训练有素的工作人员明显减少（p = 0.001），专用于SCD的床位减少（p = 0.003），感染筛查工具的使用减少（p = 0.033）。在没有设备的医疗中心，患者对沟通、疼痛控制和心理支持的满意度也较低（均p < 0.001），对遗传咨询和SCD遗传的认识也较低（p < 0.001）。结论：本研究揭示了被调查地区SCD管理的实质性不足。迫切需要解决人员配备、培训和资源可用性方面的差距。加强卫生保健系统的合作努力可以极大地改善结果，并确保SCD患者获得合适的高质量护理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Pediatric Blood & Cancer 医学-小儿科

CiteScore

4.90

自引率

9.40%

发文量

546

审稿时长

1.5 months

期刊介绍： Pediatric Blood & Cancer publishes the highest quality manuscripts describing basic and clinical investigations of blood disorders and malignant diseases of childhood including diagnosis, treatment, epidemiology, etiology, biology, and molecular and clinical genetics of these diseases as they affect children, adolescents, and young adults. Pediatric Blood & Cancer will also include studies on such treatment options as hematopoietic stem cell transplantation, immunology, and gene therapy.