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卢旺达患者及医护人员对急性白血病的经验与认知:一项定性研究

Experience and Perception of Patients and Healthcare Professionals on Acute Leukemia in Rwanda: A Qualitative Study.

作者信息

Rugwizangoga Belson, Niyikora Narcisse, Musabyimana Angèle, Izimukwiye Annie-Isabelle, Aurelius Johan, Martner Anna, Umubyeyi Aline

机构信息

University Teaching Hospital of Kigali, School of Medicine and Pharmacy, College of Medicine and Health Sciences, University of Rwanda, Kigali, Rwanda.

TIMM Laboratory, Sahlgrenska Center for Cancer Research, Department of Infectious Diseases, Institute of Biomedicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.

出版信息

Cancer Manag Res. 2022 Jun 11;14:1923-1934. doi: 10.2147/CMAR.S362882. eCollection 2022.

Abstract

PURPOSE

To explore challenges associated with the timely diagnosis, therapy, and prognosis of acute leukemia in Rwanda.

METHODS

This is a qualitative study using a phenomenological approach that involved patients, patients' guardians, and healthcare professionals such as physicians from district hospitals and specialists from referral hospitals, as well as healthcare administrators. The primary data were collected from district and referral hospitals and central healthcare administration in Rwanda. The data were collected between July and October 2019. In-depth interviews were conducted, and thematic analysis was employed to interpret the results.

RESULTS

We identified barriers to seeking healthcare such as (i) insufficient knowledge within the population may lead patients and their guardians to consult traditional healers before seeking qualified medical care, and (ii) financial constraints that preclude payment of healthcare fees or other out-of-pocket cost related to diagnosis and treatment. We also observed that the referral system is tedious and primary healthcare facilities lack the competence and resources for the necessary diagnostic practices. Both may further delay diagnosis and therapy. Accordingly, healthcare professionals at the referral hospitals stated that most patients were seen at an advanced stage of the disease. For the treatment of acute lymphoblastic leukemia (ALL), only chemotherapy is utilized in Rwanda, while bone marrow (BM) transplantation is not available. Palliation is the only available treatment for the vast majority of Rwandan acute myeloid leukemia (AML) patients.

CONCLUSION

ALL and AML are likely under-reported in Rwanda and diagnosis may be delayed, which may be explained by patient-related factors (lack of knowledge, financial constraints), a tedious referral system, and suboptimal diagnostic resources.

摘要

目的

探讨卢旺达急性白血病在及时诊断、治疗和预后方面所面临的挑战。

方法

这是一项采用现象学方法的定性研究,涉及患者、患者监护人以及医疗保健专业人员,如地区医院的医生、转诊医院的专家以及医疗保健管理人员。主要数据收集自卢旺达的地区和转诊医院以及中央医疗保健管理部门。数据收集于2019年7月至10月期间。进行了深入访谈,并采用主题分析法对结果进行解读。

结果

我们确定了寻求医疗保健的障碍,例如:(i)人群中知识不足可能导致患者及其监护人在寻求合格医疗护理之前咨询传统治疗师;(ii)经济限制使得无法支付医疗费用或与诊断和治疗相关的其他自付费用。我们还观察到转诊系统繁琐,基层医疗保健设施缺乏进行必要诊断操作的能力和资源。这两者都可能进一步延迟诊断和治疗。因此,转诊医院的医疗保健专业人员表示,大多数患者就诊时疾病已处于晚期。在卢旺达,急性淋巴细胞白血病(ALL)的治疗仅采用化疗,而无法进行骨髓(BM)移植。姑息治疗是绝大多数卢旺达急性髓细胞白血病(AML)患者唯一可获得的治疗方法。

结论

在卢旺达,ALL和AML可能报告不足,诊断可能会延迟,这可能由患者相关因素(知识缺乏、经济限制)、繁琐的转诊系统以及欠佳的诊断资源来解释。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/aac4/9200230/9493ecd9f1d6/CMAR-14-1923-g0001.jpg

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