在冠状动脉的异常大动脉起源的运动行为和福祉的感知
Sandra Mihail1, Tam T Doan2,3, Thomas S Przybycien2
1Baylor College of Medicine, Houston, TX, USA.
European journal of pediatrics
|August 18, 2024
概括
冠状动脉异常大动脉起源 (AAOCA) 诊断影响年轻患者和家长的运动行为和情感福祉. 不管风险类别或管理策略如何,对运动安全和未满足需求的看法仍然存在.
科学领域:
- 心脏病学 心脏病学
- 儿童心脏病学 儿童心脏病学
- 遗传性心脏病是一种先天性心脏病.
背景情况:
- 冠状动脉的异常大动脉起源 (AAOCA) 是年轻人突然心脏死亡的重要原因.
- 在AAOCA患者的运动限制管理是复杂的,并根据亚型和感知风险而异.
- 关于AAOCA患者及其家长的诊断后运动行为,安全感知和心理社会福祉的数据有限.
研究的目的:
- 调查AAOCA诊断对患者和家长运动行为,体育活动期间感知到的安全性和情感福祉的影响.
- 根据AAOCA亚型,手术干预和医生施加的限制来识别这些感知中的差异.
- 突出未满足的需要在年轻患者的护理AAOCA.
主要方法:
- 对AAOCA患者及其家长进行了定性和定量调查.
- 调查评估了运动频率,遵守限制,竞争和娱乐运动的安全感,以及心理社会福祉.
- 统计分析,包括千二测试,费舍尔的精确测试和科恩的卡帕,用于比较和一致性评估.
主要成果:
- 22%的患者面临医生强加的运动限制,而父母和孩子自我强加的额外限制.
- 很大一部分家长 (61%在竞争中,33%在娱乐中) 和儿童 (22%) 认为运动是不安全的.
- 三分之一的家庭报告了负面情绪 (悲伤,愤怒,孤独),一半的人感到不同; 47%的孩子希望更多地运动.
- 在限制状态,AAOCA亚型或手术管理之间没有发现明显的感知差异.
结论:
- 在AAOCA患者和家人中,对运动行为和安全的看法各不相同,并对幸福感产生重大影响.
- 这些感知存在于患者的风险类别或管理策略之外.
- 解决这些未得到满足的心理社会和行为需求应该是AAOCA患者护理的优先事项.
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