获得医疗保健,症状负担和心肌缩症的心理影响:一项以患者为导向的跨国调查
Emil Tsenov1, Jolanda Van der Velden2,3, Matteo Pinciroli4
1European HCM Patient Foundation, Vienna, Austria.
概括
过高心肌病 (HCM) 严重影响生活质量,导致疲劳和呼吸短促. 许多患者面临着就业挑战和有限的心理健康支持,这凸显了HCM护理的未满足需求.
科学领域:
- 心脏病学
- 遗传学
- 患者报告的结果
背景情况:
- 缩性心肌病是一种具有广泛影响的复杂遗传性心脏病.
- 现有的研究主要集中在病理生理学和治疗上,忽视了患者的经验.
研究的目的:
- 调查欧洲各地患者报告的高性心肌病 (HCM) 经验.
- 确定日常生活中的挑战,医疗管理和心理健康.
主要方法:
- 从2024年12月到2025年2月进行了一项跨部门,跨国在线调查.
- 参与者在欧洲被诊断出患有HCM,并填写有关人口统计,症状,日常影响和心理状况的问卷.
- 数据通过子组分析进行描述性分析.
主要成果:
- 来自18个欧洲国家的337名参与者回应了.
- 呼吸短促和疲劳显著影响生活质量.
- 有15%的人因HCM失业;14%的人工作时间有限;9%的人面临工作类型的限制.
- 尽管有心理负担, 只有15%的人获得心理健康支持.
结论:
- 在医疗保健,症状负担和心理支持方面,医疗保健管理存在重大差距.
- 加强以患者为中心的护理需要改善途径,整合心理健康服务和工作场所的适应性.
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