赋予先天性心脏病患者权力:为共享决策制定数字问题提示清单的开发:试点研究
Hajar Habibi1,2, Emily Tulloh3, Michael A Gatzoulis1,2
1Royal Brompton and Harefield Hospital, London, UK.
Cardiology in the young
|September 11, 2025
概括
问我任何事 (AMA) 数字工具帮助患有先天性心脏病 (CHD) 的成年人参与共享决策. 这项试点研究表明,AMA工具可用于改善终身心血管疾病护理中的患者提供者协作.
科学领域:
- 心脏病学 心脏病学
- 数字健康数字健康
- 患者赋权是患者赋权的一种方式.
背景情况:
- 超过97%的患有先天性心脏病 (CHD) 的患者现在活到成年,需要终身护理.
- 像"问我任何事" (AMA) 这样的数字健康工具旨在增强患者参与和临床医生合作.
- 越来越多的患有心血管疾病的成年人需要创新的支持系统来管理他们复杂的健康需求.
研究的目的:
- 评估AMA数字工具在吸引成人先天性心脏病 (ACHD) 患者中的可行性.
- 评估AMA工具在支持患者和临床医生之间共享决策方面的潜力.
- 使用数字问题提示列表 (QPL) 探索患者选择的咨询主题.
主要方法:
- 一项试点研究涉及70名心血管疾病患者,其中58人填写了问卷 (82.9%的响应率).
- 患者使用数字QPL在咨询前从预定义的列表中选择关键主题.
- 在研究开始之前获得了机构许可.
主要成果:
- 患者经常选择有关预后,衰老,情绪健康,生活方式和未来干预措施的问题.
- AMA工具促进了更个性化的咨询.
- 该工具促进了患者积极参与咨询.
结论:
- AMA工具是吸引 ACHD 患者的一种可行的方法.
- 该工具支持在成人先天性心脏病管理中的共享决策.
- 建议进行进一步的研究,以优化系统集成和评估长期结果.
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