在家庭患者调查中,听觉静脉评估的可接受性
Amanda J Male1, Nehzat Koohi1, Sarah L Holmes2
1SENSE Research Unit, Department of Clinical and Movement Neurosciences, Institute of Neurology, University College London, 33 Queen Square, London WC1N 3BG, UK.
在COVID-19大流行期间,脆弱的线粒体疾病患者高评价了基于家庭的听觉静脉评估. 这种以人为中心的方法被证明是可行的,可以接受的和有益的,100%推该服务.
科学领域:
- 听力学 听力学是指听力学.
- 神经科学是一个神经科学.
- 遗传学 是一个遗传学.
背景情况:
- 随着COVID-19大流行,医疗保健提供需要发生重大变化,包括虚拟预约和患者隔离.
- 弱势群体,如线粒体疾病患者,在获得基本的医院诊断服务方面面临挑战.
- 这些与大流行有关的变化影响了涉及专业音声静脉测试的观察队列研究的招聘和继续.
研究的目的:
- 为了评估在家进行的线粒体疾病患者的视听静脉评估的可行性,可接受性和患者报告的结果.
- 评估在患者的家庭环境中进行专业神经瘤学评估的感知好处和缺点.
- 为了确定以人为中心,以家庭为基础的方法是否可以成为弱势患者群体的可行替代方案.
主要方法:
- 修改了观察队列研究协议,以允许符合条件的参与者在家进行评估.
- 十七名患有线粒体疾病的参与者因COVID-19隔离要求而接受了在家进行的神经瘤学评估.
- 随后进行了一项匿名在线调查,以收集患者对家庭评估经验的反.
主要成果:
- 所有16名调查受访者 (100%) 均对他们的家庭评估经验评价为积极的,并会推它.
- 63%的参与者认为家庭评估优于传统的医院门诊测试.
- 主要报告的好处包括消除旅行负担 (27%) 和减少患者压力 (13%),大多数人都没有注意到任何显著的缺点.
结论:
- 基于家庭的听觉静脉评估是一种可行和可接受的方法,可以为脆弱的患者提供专业护理,特别是那些患有线粒体疾病的患者.
- 患者反强烈支持以人为中心的方法,强调了家庭访问的便利性和减少焦虑的好处.
- 这种可适应的护理模式表明,有潜力提高面临风险群体的听力学和神经耳学服务的可访问性和患者满意度.
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