来自发展中国家的血友病和其他遗传性出血性疾病患者的卓越护理之旅:来自坦桑尼亚的见解。

IF 2.7 Q3 HEMATOLOGY
Journal of Blood Medicine Pub Date : 2025-09-10 eCollection Date: 2025-01-01 DOI:10.2147/JBM.S537383
Stella Samson Rwezaula, Samson D Mtoba, Rashid A Gosse, Rebecca W Mwakichako, Abdallah Raphael Makalla, Martha Loiseyeki Bruckman, Luhongedzo Gerson Matandala, Linda Alphey Shao, Hedwiga Francis Swai, Michelle Sholzberg, Jerome Teitel, Amos Rodger Mwakigonja, Oluyemi Akinloye
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引用次数: 0

摘要

血友病是一种由F8和F9基因突变引起的x连锁隐性出血性疾病,在资源有限的环境中仍未得到充分诊断。在坦桑尼亚,估计只有不到10%的血友病患者得到诊断。集中的服务、有限的诊断能力和对现有疗法的利用不足是及时有效护理的主要障碍。本审查报告了为在坦桑尼亚建立和扩大血友病护理所开展的活动,描绘了迈向卓越的旅程。方法:这是对国家规划报告、来自坦桑尼亚血友病协会的登记数据以及对直接参与2021年至2025年4月血友病服务发展的主要人员的访谈的全面回顾。结果:在2021年至2025年期间,坦桑尼亚在加强血友病护理方面取得了重大进展。在血友病和其他遗传性出血性疾病的专业诊断、治疗和管理方面,对当地和国际多学科工作人员进行了培训。建立了14个血友病诊所,包括在Muhimbili国立医院设立的全国综合诊所以及在各地区和地区医院设立的卫星诊所,提供筛查、诊断和综合护理。截至2025年4月17日,共有473名患者注册并通过该网络接受有组织的护理。结论:将血液学专业培训、利益攸关方参与、通过14家诊所下放服务以及制定国家登记和临床指南相结合,显著提高了坦桑尼亚诊断和管理血友病和其他遗传性出血性疾病的能力。展望未来,必须扩大区域覆盖范围,加强以社区为基础的认识和筛查行动,加强能力建设和研究工作,并建立一个专门的卓越中心,致力于推进血友病护理、专业培训、研究和创新。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania.

Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania.

Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania.

Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania.

Introduction: Haemophilia, an X-linked recessive bleeding disorder caused by mutations in the F8 and F9 genes, remains profoundly underdiagnosed in resource-limited settings. In Tanzania, it is estimated that fewer than 10% of individuals with haemophilia are diagnosed. Centralized services, limited diagnostic capacity, and underutilization of available therapies pose major barriers to timely and effective care. This review reports on the activities undertaken to establish and expand haemophilia care in Tanzania, charting the journey toward excellence.

Methods: This is a comprehensive review of national program reports, registry data from the Haemophilia Society of Tanzania, and interviews with key personnel directly involved in the development of haemophilia services between 2021 and April 2025.

Results: Between 2021 and 2025, Tanzania made significant strides in strengthening haemophilia care. A multidisciplinary workforce was trained both locally and internationally in specialized diagnosis, treatment, and management of haemophilia and other inherited bleeding disorders. Fourteen haemophilia clinics were established, including a national comprehensive clinic at Muhimbili National Hospital and satellite clinics across zonal and regional hospitals, providing screening, diagnosis, and comprehensive care. As of 17th April 2025, a total of 473 patients had been registered and were receiving structured care through this network.

Conclusion: The integration of specialized haematological training, stakeholder engagement, decentralization of services through 14 clinics, and the development of a national registry and clinical guidelines have markedly enhanced Tanzania's capacity to diagnose and manage haemophilia and other inherited bleeding disorders. Moving forward, it is imperative to expand regional coverage, intensify community-based awareness and screening initiatives, strengthen capacity building and research efforts, and establish a specialized centre of excellence dedicated to advancing haemophilia care, professional training, research, and innovation.

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来源期刊
CiteScore
3.50
自引率
0.00%
发文量
94
审稿时长
16 weeks
期刊介绍: The Journal of Blood Medicine is an international, peer-reviewed, open access, online journal publishing laboratory, experimental and clinical aspects of all topics pertaining to blood based medicine including but not limited to: Transfusion Medicine (blood components, stem cell transplantation, apheresis, gene based therapeutics), Blood collection, Donor issues, Transmittable diseases, and Blood banking logistics, Immunohematology, Artificial and alternative blood based therapeutics, Hematology including disorders/pathology related to leukocytes/immunology, red cells, platelets and hemostasis, Biotechnology/nanotechnology of blood related medicine, Legal aspects of blood medicine, Historical perspectives. Original research, short reports, reviews, case reports and commentaries are invited.
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