ARVC中围绕运动的决策特征:决策冲突、决策后悔和共同决策分析。

IF 6 2区 医学 Q1 CARDIAC & CARDIOVASCULAR SYSTEMS Circulation: Genomic and Precision Medicine Pub Date : 2023-12-01 Epub Date: 2023-11-28 DOI:10.1161/CIRCGEN.123.004133
Jessica Sweeney, Crystal Tichnell, Susan Christian, Catherine Pendelton, Brittney Murray, Debra L Roter, Leila Jamal, Hugh Calkins, Cynthia A James
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引用次数: 0

摘要

背景:由于心律失常性右室心肌病(ARVC)与外显率、心律失常和结构进展相关,建议限制高强度运动。指南建议对运动水平进行共同决策(SDM),但很少有证据表明其影响。因此,我们试图评估SDM对ARVC患者和高危亲属的运动、决策冲突量表(DCS)和决策后悔(DRS)的影响程度和意义。方法:在约翰霍普金斯大学ARVC登记处登记的诊断为ARVC或基因检测阳性的成年人被邀请完成一份调查问卷,包括运动史和当前运动、SDM (SDM- q -9)、DCS和DRS。结果:总有效率为64.8%。三分之二的参与者(68.0%,n=121)在诊断/基因测试(DCS≥25)中报告了与运动相关的临床显著DCS,一半(55.1%,n=98)在过去一年中报告了DCS。DRS患病率也很高,55.3% (n=99)报告中度至重度DRS (DRS≥25)。SDM的程度变化很大,从无(0)到完全(100)SDM(平均59.6±25.0)。在青春期(≤21岁)确诊的患者报告的SDM显著增加(P=0.013)。重要的是,SDM与较少DCS相关(ß=-0.66, R2=0.567, P2=0.180, PP=0.56;分别为P = 0.34)。结论:SDM与较低DCS和DRS相关;然而,诊断后运动无差异。因此,我们的数据支持SDM作为ARVC运动讨论的首选模型。
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Characterizing Decision-Making Surrounding Exercise in ARVC: Analysis of Decisional Conflict, Decisional Regret, and Shared Decision-Making.

Background: Limiting high-intensity exercise is recommended for patients with arrhythmogenic right ventricular cardiomyopathy (ARVC) due to its association with penetrance, arrhythmias, and structural progression. Guidelines recommend shared decision-making (SDM) for exercise level, but there is little evidence regarding its impact. Therefore, we sought to evaluate the extent and implications of SDM for exercise, decisional conflict, and decisional regret in patients with ARVC and at-risk relatives.

Methods: Adults diagnosed with ARVC or with positive genetic testing enrolled in the Johns Hopkins ARVC Registry were invited to complete a questionnaire that included exercise history and current exercise, SDM (SDM-Q-9), decisional conflict, and decisional regret.

Results: The response rate was 64.8%. Two-thirds of participants (68.0%, n=121) reported clinically significant decisional conflict regarding exercise at diagnosis/genetic testing (DCS [decisional conflict scale]≥25), and half (55.1%, n=98) in the past year. Prevalence of decisional regret was also high with 55.3% (n=99) reporting moderate to severe decisional regret (DRS [decisional regret scale]≥25). The extent of SDM was highly variable ranging from no (0) to perfect (100) SDM (mean, 59.6±25.0). Those diagnosed in adolescence (≤age 21) reported significantly more SDM (P=0.013). Importantly, SDM was associated with less decisional conflict (ß=-0.66, R2=0.567, P<0.01) and decisional regret (ß=-0.37, R2=0.180, P<0.001) and no difference in vigorous intensity aerobic exercise in the 6 months after diagnosis/genetic testing or the past year (P=0.56; P=0.34, respectively).

Conclusions: SDM is associated with lower decisional conflict and decisional regret; and no difference in postdiagnosis exercise. Our data thus support SDM as the preferred model for exercise discussions for ARVC.

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来源期刊
Circulation: Genomic and Precision Medicine
Circulation: Genomic and Precision Medicine Biochemistry, Genetics and Molecular Biology-Genetics
CiteScore
9.20
自引率
5.40%
发文量
144
期刊介绍: Circulation: Genomic and Precision Medicine is a distinguished journal dedicated to advancing the frontiers of cardiovascular genomics and precision medicine. It publishes a diverse array of original research articles that delve into the genetic and molecular underpinnings of cardiovascular diseases. The journal's scope is broad, encompassing studies from human subjects to laboratory models, and from in vitro experiments to computational simulations. Circulation: Genomic and Precision Medicine is committed to publishing studies that have direct relevance to human cardiovascular biology and disease, with the ultimate goal of improving patient care and outcomes. The journal serves as a platform for researchers to share their groundbreaking work, fostering collaboration and innovation in the field of cardiovascular genomics and precision medicine.
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