{"title":"从患者角度看再生障碍性贫血疾病负担和津巴布韦的生活质量,作者:A. Maramba和J. Mupini。","authors":"Aaron Maramba, Joice Mupini, Shungu Munyati, Tendai Chris Maboreke, Justen Manasa, Lovemore Gwanzura","doi":"10.2147/JBM.S457128","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Aplastic Anaemia (AA) is a critical haematological disorder characterized by pancytopenia and marrow hypoplasia. It is generally regarded as a rare disease albeit with multiple symptoms. The aim of the study was to get the patients' perspective to evaluate the disease burden and their knowledge, attitude, practices, and adherence to treatment.</p><p><strong>Patients and methods: </strong>This qualitative cross-sectional study was conducted at the Parirenyatwa Group of Hospitals in Harare, Zimbabwe, to investigate patients' perspectives on their knowledge, attitudes, practices and disease burden regarding AA.</p><p><strong>Results: </strong>Eleven participants diagnosed with AA via bone marrow biopsy were recruited between November 2022 and May 2023. A structured, ethically approved questionnaire was used to gather data on demographics, clinical status, treatment experiences, and overall disease knowledge. Results showed that respondents generally possessed a robust understanding of their condition; however, financial constraints significantly hindered access to appropriate treatment options, including potential curative therapies such as hematopoietic stem cell transplantation. Zimbabwean healthcare faces profound challenges, with less than 5% of patients receiving appropriate therapy within the first year of diagnosis.</p><p><strong>Conclusion: </strong>This study underscores the urgent need for enhanced patient support systems and policies to improve healthcare access for individuals with AA in Zimbabwe. Recommendations include the development of targeted awareness initiatives and supportive resources to elevate the quality of life for patients with aplastic anaemia.</p>","PeriodicalId":15166,"journal":{"name":"Journal of Blood Medicine","volume":"16 ","pages":"259-268"},"PeriodicalIF":2.1000,"publicationDate":"2025-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12134467/pdf/","citationCount":"0","resultStr":"{\"title\":\"Aplastic Anaemia Disease Burden From the Patient Perspective and Quality of Life in Zimbabwe by A. <i>Maramba and J. Mupini</i>.\",\"authors\":\"Aaron Maramba, Joice Mupini, Shungu Munyati, Tendai Chris Maboreke, Justen Manasa, Lovemore Gwanzura\",\"doi\":\"10.2147/JBM.S457128\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>Aplastic Anaemia (AA) is a critical haematological disorder characterized by pancytopenia and marrow hypoplasia. It is generally regarded as a rare disease albeit with multiple symptoms. The aim of the study was to get the patients' perspective to evaluate the disease burden and their knowledge, attitude, practices, and adherence to treatment.</p><p><strong>Patients and methods: </strong>This qualitative cross-sectional study was conducted at the Parirenyatwa Group of Hospitals in Harare, Zimbabwe, to investigate patients' perspectives on their knowledge, attitudes, practices and disease burden regarding AA.</p><p><strong>Results: </strong>Eleven participants diagnosed with AA via bone marrow biopsy were recruited between November 2022 and May 2023. A structured, ethically approved questionnaire was used to gather data on demographics, clinical status, treatment experiences, and overall disease knowledge. Results showed that respondents generally possessed a robust understanding of their condition; however, financial constraints significantly hindered access to appropriate treatment options, including potential curative therapies such as hematopoietic stem cell transplantation. Zimbabwean healthcare faces profound challenges, with less than 5% of patients receiving appropriate therapy within the first year of diagnosis.</p><p><strong>Conclusion: </strong>This study underscores the urgent need for enhanced patient support systems and policies to improve healthcare access for individuals with AA in Zimbabwe. Recommendations include the development of targeted awareness initiatives and supportive resources to elevate the quality of life for patients with aplastic anaemia.</p>\",\"PeriodicalId\":15166,\"journal\":{\"name\":\"Journal of Blood Medicine\",\"volume\":\"16 \",\"pages\":\"259-268\"},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2025-05-30\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12134467/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Blood Medicine\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.2147/JBM.S457128\",\"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.S457128","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}
Aplastic Anaemia Disease Burden From the Patient Perspective and Quality of Life in Zimbabwe by A. Maramba and J. Mupini.
Purpose: Aplastic Anaemia (AA) is a critical haematological disorder characterized by pancytopenia and marrow hypoplasia. It is generally regarded as a rare disease albeit with multiple symptoms. The aim of the study was to get the patients' perspective to evaluate the disease burden and their knowledge, attitude, practices, and adherence to treatment.
Patients and methods: This qualitative cross-sectional study was conducted at the Parirenyatwa Group of Hospitals in Harare, Zimbabwe, to investigate patients' perspectives on their knowledge, attitudes, practices and disease burden regarding AA.
Results: Eleven participants diagnosed with AA via bone marrow biopsy were recruited between November 2022 and May 2023. A structured, ethically approved questionnaire was used to gather data on demographics, clinical status, treatment experiences, and overall disease knowledge. Results showed that respondents generally possessed a robust understanding of their condition; however, financial constraints significantly hindered access to appropriate treatment options, including potential curative therapies such as hematopoietic stem cell transplantation. Zimbabwean healthcare faces profound challenges, with less than 5% of patients receiving appropriate therapy within the first year of diagnosis.
Conclusion: This study underscores the urgent need for enhanced patient support systems and policies to improve healthcare access for individuals with AA in Zimbabwe. Recommendations include the development of targeted awareness initiatives and supportive resources to elevate the quality of life for patients with aplastic anaemia.
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.