在综合性遗传性胸前动脉疾病中使用混合方法探索患者的疼痛疲劳和体力活动
Gry Velvin1, Heidi Johansen2, Katrine Bostrøm2
1TRS National Resource Centre for rare disorders, Research and Innovation Department, Sunnaas Rehabilitation Hospital, Nesodden, 1450, Norway. Gry.velvin@sunnaas.no.
Scientific reports
|August 25, 2025
概括
综合性遗传性胸前动脉疾病 (sHTAD) 患者面临慢性疼痛和疲劳的挑战,影响日常生活和体力活动. 需要采取干预措施来控制这些症状并改善生活质量.
科学领域:
- 心脏病学
- 遗传学
- 治疗疼痛
背景情况:
- 综合性遗传性胸前大动脉疾病 (sHTAD) 带来了独特的挑战,包括慢性疼痛,疲劳和身体限制.
- 这些症状显著影响患者的日常生活和疾病管理.
研究的目的:
- 探索慢性疼痛,疲劳和身体活动的相互作用.
- 了解这些因素如何影响日常生活管理和应对策略.
主要方法:
- 一种混合方法三角化方法,结合定性焦点组 (n=36) 和定量问卷 (n=52).
- 经过验证的仪器测量了疼痛,疲劳,睡眠,体力活动和多器官症状.
- 质量数据强调生活经验和应对机制.
主要成果:
- 79% 的参与者报告慢性疼痛,58% 报告疲劳.
- 疼痛和疲劳都与睡眠障碍和多器官参与有关.
- 定性数据显示,疼痛和疲劳是影响家庭生活和工作的"消耗能量".
结论:
- 慢性疼痛和疲劳对sHTAD患者造成重大影响,加剧了健康问题.
- 管理症状和疾病相关的限制是特别困难的.
- 跨学科方法和综合医疗/社会支持对于改善生活质量至关重要.
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