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医疗保健提供者对遗传性出血性疾病患者获得医疗服务的不平等现象的看法。

Healthcare provider perspectives on inequities in access to care for patients with inherited bleeding disorders.

机构信息

Department of Medicine, University of Toronto, Toronto, Canada.

Canadian Hemophilia Society, Montreal, Quebec, Canada.

出版信息

PLoS One. 2020 Feb 20;15(2):e0229099. doi: 10.1371/journal.pone.0229099. eCollection 2020.

Abstract

INTRODUCTION

The ways in which social determinants of health affect patients with inherited bleeding disorders remains unclear. The objective of this study was to understand healthcare provider perspectives regarding access to care and diagnostic delay amongst this patient population.

METHODS

A healthcare provider survey comprising 24 questions was developed, tested, and subsequently disseminated online with recruitment to all members of The Association of Hemophilia Clinic Directors of Canada (N = 73), members of the Canadian Association of Nurses in Hemophilia Care (N = 40) and members of the Canadian Physiotherapists in Hemophilia Care (N = 44).

RESULTS

There were 70 respondents in total, for a total response rate of 45%. HCPs felt that there were diagnostic delays for patients with mild symptomatology (71%, N = 50), women presenting with abnormal uterine bleeding as their only or primary symptom (59%, N = 41), and patients living in rural Canada (50%, N = 35). Fewer respondents felt that factors such as socioeconomic status (46%, N = 32) or race (21%, N = 15) influenced access to care, particularly as compared to the influence of rural location (77%, N = 54).

DISCUSSION

We found that healthcare providers identified patients with mild symptomatology, isolated abnormal uterine bleeding, and residence in rural locations as populations at risk for inequitable access to care. These factors warrant further study, and will be investigated further by our group using our nation-wide patient survey and ongoing in-depth qualitative patient interviews.

摘要

简介

社会决定因素影响遗传性出血性疾病患者的方式仍不清楚。本研究的目的是了解医疗保健提供者对该患者群体获得医疗保健和诊断延迟的看法。

方法

开发了一项包含 24 个问题的医疗保健提供者调查,经过测试后,通过网络向加拿大血友病诊所主任协会(N=73)的所有成员、加拿大血友病护理护士协会(N=40)和加拿大血友病护理物理治疗师协会(N=44)成员在线分发了该调查。

结果

共有 70 名受访者,总回复率为 45%。医疗保健提供者认为,轻度症状患者(71%,N=50)、仅以异常子宫出血为唯一或主要症状就诊的女性(59%,N=41)和居住在加拿大农村的患者(50%,N=35)存在诊断延迟。较少的受访者认为社会经济地位(46%,N=32)或种族(21%,N=15)等因素会影响获得医疗保健的机会,与农村地区的影响相比,这种影响较小(77%,N=54)。

讨论

我们发现医疗保健提供者认为症状轻微、孤立性异常子宫出血和居住在农村地区的患者是获得医疗保健机会不平等的高危人群。这些因素值得进一步研究,我们的研究小组将通过我们的全国性患者调查和正在进行的深入定性患者访谈进一步调查这些因素。

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