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先天性主动脉瓣狭窄患者的生活:运动限制、遵医行为模式和生活质量。

Living with Congenital Aortic Stenosis: Exercise Restriction, Patterns of Adherence, and Quality of Life.

机构信息

Department of Cardiology, Department of Pediatrics, Boston Children's Hospital, Harvard Medical School, 300 Longwood Ave, Boston, MA, 02115, USA.

Department of Pediatrics, Dartmouth-Hitchcock Medical Center, Geisel School of Medicine at Dartmouth, Lebanon, NH, USA.

出版信息

Pediatr Cardiol. 2024 Oct;45(7):1430-1439. doi: 10.1007/s00246-023-03165-2. Epub 2023 Jun 21.

DOI:10.1007/s00246-023-03165-2
PMID:37344559
Abstract

Modern consensus panel guidelines recommend restriction from most organized sports for patients with moderate or severe aortic stenosis (AS). However, there is little published data on how frequently physicians deviate from guidelines, how well patients adhere to exercise restrictions, or the effect of restriction on patient-reported quality of life. In this study, we surveyed 93 subjects with AS and their cardiologists regarding participation in organized sports, physical activity, weightlifting, and exercise restriction. Subjects completed the pediatric quality of life inventory (PedsQL) and the pediatric cardiac quality of life inventory (PCQLI). We found that subjects with severe AS (n = 3) were commonly, but not universally, restricted from organized sports (n = 2, 66%). Subjects with moderate AS (n = 40) were rarely restricted from organized sports (n = 6, 17%). No physician-specific characteristics were associated with increased likelihood of recommending exercise restriction. Subjects were more likely to be restricted if they were older (16 years vs. 13 years, p 0.02) and had moderate versus mild AS (p 0.013). PCQLI scores for teens and young adults with AS (age 13-25) were lower than a comparison group of patients with mild congenital heart disease. For all age groups, the PedsQL social functioning score was lower for subjects with exercise restriction (p 0.052). In summary, cardiologists apply consensus guidelines leniently when restricting patients with moderate/severe AS from organized sports and weightlifting. Patients with AS routinely adhere to exercise restriction recommendations. Children and young adults with AS and exercise restriction have lower QOL scores in the social functioning domain.

摘要

现代共识小组指南建议,中重度主动脉瓣狭窄(AS)患者应限制参加大多数有组织的运动。然而,关于医生偏离指南的频率、患者遵守运动限制的程度以及限制对患者报告的生活质量的影响,发表的数据很少。在这项研究中,我们调查了 93 名 AS 患者及其心脏病专家,了解他们参加有组织的运动、体育活动、举重和运动限制的情况。受试者完成了儿童生活质量问卷(PedsQL)和儿童心脏生活质量问卷(PCQLI)。我们发现,3 名严重 AS 患者(n=3)通常但并非普遍被限制参加有组织的运动(n=2,66%)。40 名中度 AS 患者(n=40)很少被限制参加有组织的运动(n=6,17%)。没有发现医生的特定特征与推荐运动限制的可能性增加有关。如果患者年龄较大(16 岁与 13 岁,p<0.02)且为中度而非轻度 AS(p<0.013),则更有可能受到限制。13-25 岁患有 AS 的青少年和年轻人的 PCQLI 评分低于轻度先天性心脏病患者的对照组。对于所有年龄组,有运动限制的患者的 PedsQL 社交功能评分较低(p<0.052)。总之,心脏病专家在限制中重度 AS 患者参加有组织的运动和举重时,会宽松地应用共识指南。AS 患者通常会遵守运动限制的建议。有运动限制的 AS 儿童和青少年的生活质量评分在社交功能方面较低。

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