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
{"title":"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。","authors":"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","doi":"10.2147/JBM.S537383","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>Haemophilia, an X-linked recessive bleeding disorder caused by mutations in the <i>F8</i> and <i>F9</i> 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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":15166,"journal":{"name":"Journal of Blood Medicine","volume":"16 ","pages":"413-423"},"PeriodicalIF":2.7000,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12433640/pdf/","citationCount":"0","resultStr":"{\"title\":\"Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania.\",\"authors\":\"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\",\"doi\":\"10.2147/JBM.S537383\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Introduction: </strong>Haemophilia, an X-linked recessive bleeding disorder caused by mutations in the <i>F8</i> and <i>F9</i> 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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>\",\"PeriodicalId\":15166,\"journal\":{\"name\":\"Journal of Blood Medicine\",\"volume\":\"16 \",\"pages\":\"413-423\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2025-09-10\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12433640/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Blood Medicine\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.2147/JBM.S537383\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q3\",\"JCRName\":\"HEMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Blood Medicine","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2147/JBM.S537383","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"HEMATOLOGY","Score":null,"Total":0}
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.
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.