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血友病患者的健康状况:来自资源有限国家的一项初步调查

Health Status of Persons with Hemophilia: A Pilot Survey from a Resource-Constrained Country.

作者信息

Okoye Helen C, Nwogoh Benedict, Adediran Megan, Nwagha Theresa U

机构信息

Department of Haematology and Immunology, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria.

Department of Haematology, School of Medicine, University of Benin, Benin City, Edo, Nigeria.

出版信息

Niger Med J. 2019 Mar-Apr;60(2):87-91. doi: 10.4103/nmj.NMJ_33_19.

DOI:10.4103/nmj.NMJ_33_19
PMID:31462848
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6688393/
Abstract

BACKGROUND

Most resource-poor countries are yet to develop standard hemophilia treatment center (HTC) despite improved outcome of health status of persons with hemophilia (PWH).

AIM

This study aimed to evaluate the health status of PWH in Nigeria.

METHODOLOGY

In this descriptive, cross-sectional study, modified prevalidated and pretested questionnaire (National health and Nutrition examination survey (NHANES) 2013 Health Status questionnaire (HSQ)) was consecutively administered to consenting PWH (pediatric and adult) attending the 2018 Annual General Meeting of the Haemophilia Foundation of Nigeria. The study's measurable outcome variables were calculated health status and its determinants. Association between the outcome variables and clinical characteristics of PWH was done using SPSS software version 22, and < 0.05 was considered statistically significant.

RESULTS

Of the 36 PWH who participated in the survey, 50% had good health status, 38.9% had poor health status, while only 11.1% had excellent health status. A majority (88.9%) had access to HTC with <6 consultations in the past year. Nearly 47.2% were hospitalized for disease-related problem in the past year. There was nonsignificant difference between health status and disease type ( = 0.751) and severity ( = 0.086), treatment plan (0.496), type of treatment facility ( = 0.152), and access to a doctor ( = 0.67).

CONCLUSION

Several PWH in resource-poor settings still suffer serious morbidity that impacts negatively on their health status. More robust (multicenter) research is needed to ascertain the true picture of health status of PWH in resource-poor countries.

摘要

背景

尽管血友病患者(PWH)的健康状况有所改善,但大多数资源匮乏国家尚未建立标准的血友病治疗中心(HTC)。

目的

本研究旨在评估尼日利亚PWH的健康状况。

方法

在这项描述性横断面研究中,对参加2018年尼日利亚血友病基金会年度大会的同意参与的PWH(儿童和成人)连续发放经过修改、预先验证和预测试的问卷(2013年国家健康和营养检查调查(NHANES)健康状况问卷(HSQ))。该研究的可测量结果变量为计算得出的健康状况及其决定因素。使用SPSS 22软件分析结果变量与PWH临床特征之间的关联,P < 0.05被认为具有统计学意义。

结果

在参与调查的36名PWH中,50%健康状况良好,38.9%健康状况较差,只有11.1%健康状况极佳。大多数(88.9%)能够使用HTC,且过去一年就诊次数少于6次。近47.2%的患者在过去一年因疾病相关问题住院。健康状况与疾病类型(P = 0.751)、严重程度(P = 0.086)、治疗方案(P = 0.496)、治疗机构类型(P = 0.152)以及是否能看医生(P = 0.67)之间无显著差异。

结论

资源匮乏地区的一些PWH仍遭受严重发病情况,对其健康状况产生负面影响。需要开展更有力的(多中心)研究,以确定资源匮乏国家PWH健康状况的真实情况。

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本文引用的文献

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Challenges in the management of bleeding disorders in Nigeria.尼日利亚出血性疾病管理中的挑战。
Niger J Clin Pract. 2018 Apr;21(4):468-472. doi: 10.4103/njcp.njcp_319_17.
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First-year results of an expanded humanitarian aid programme for haemophilia in resource-constrained countries.资源有限国家扩大血友病人道援助计划的第一年成果。
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Haemophilia and joint disease: pathophysiology, evaluation, and management.血友病与关节疾病:病理生理学、评估及管理
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Management of Haemophilia in Developing Countries: Challenges and Options.发展中国家血友病的管理:挑战与选择
Indian J Hematol Blood Transfus. 2016 Sep;32(3):347-55. doi: 10.1007/s12288-015-0562-x. Epub 2015 Jun 18.
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Costs and utilization of treatment in patients with hemophilia.血友病患者的治疗成本与利用情况
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7
Health care financing in Nigeria: Implications for achieving universal health coverage.尼日利亚的医疗保健融资:对实现全民健康覆盖的影响。
Niger J Clin Pract. 2015 Jul-Aug;18(4):437-44. doi: 10.4103/1119-3077.154196.
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Towards universal coverage: a policy analysis of the development of the National Health Insurance Scheme in Nigeria.迈向全民覆盖:尼日利亚国家健康保险计划发展的政策分析
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Knowledge, care-seeking behavior, and factors associated with patient delay among newly-diagnosed pulmonary tuberculosis patients, Federal Capital Territory, Nigeria, 2010.2010年尼日利亚联邦首都地区新诊断肺结核患者的知识、就医行为及与患者延迟相关的因素
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Quality of haemophilia care in The Netherlands: new standards for optimal care.荷兰血友病护理质量:最佳护理新标准
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