Aplastic Anaemia Disease Burden From the Patient Perspective and Quality of Life in Zimbabwe by A. Maramba and J. Mupini.

IF 2.1 Q3 HEMATOLOGY
Journal of Blood Medicine Pub Date : 2025-05-30 eCollection Date: 2025-01-01 DOI:10.2147/JBM.S457128
Aaron Maramba, Joice Mupini, Shungu Munyati, Tendai Chris Maboreke, Justen Manasa, Lovemore Gwanzura
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Abstract

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.

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。
目的:再生障碍性贫血(AA)是一种以全血细胞减少和骨髓发育不全为特征的严重血液学疾病。它通常被认为是一种罕见的疾病,尽管有多种症状。该研究的目的是获得患者的观点,以评估疾病负担和他们的知识,态度,做法,并坚持治疗。患者和方法:本定性横断面研究在津巴布韦哈拉雷的Parirenyatwa医院集团进行,旨在调查患者对AA的知识、态度、做法和疾病负担的看法。结果:在2022年11月至2023年5月期间招募了11名通过骨髓活检诊断为AA的参与者。一份结构化的、经伦理批准的问卷用于收集人口统计、临床状况、治疗经验和总体疾病知识的数据。结果表明,受访者普遍对自己的状况有一个强有力的了解;然而,财政限制严重阻碍了获得适当的治疗选择,包括潜在的治愈疗法,如造血干细胞移植。津巴布韦的医疗保健面临着深刻的挑战,不到5%的患者在诊断后的第一年接受适当的治疗。结论:本研究强调了加强患者支持系统和政策的迫切需要,以改善津巴布韦AA患者的医疗保健获取。建议包括制定有针对性的提高认识举措和支持性资源,以提高再生障碍性贫血患者的生活质量。
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
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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