Characterizing Decision-Making Surrounding Exercise in ARVC: Analysis of Decisional Conflict, Decisional Regret, and Shared Decision-Making.

Autor:	Sweeney J; Johns Hopkins Bloomberg School of Public Health (J.S., D.L.R.), Johns Hopkins University, Baltimore.; National Human Genome Research Institute (J.S.), National Institutes of Health, Bethesda, MD., Tichnell C; Division of Cardiology, Department of Medicine (C.T., C.P., B.M., H.C., C.A.J.), Johns Hopkins University, Baltimore., Christian S; Department of Medical Genetics, University of Alberta, Edmonton, Canada (S.C.)., Pendelton C; Division of Cardiology, Department of Medicine (C.T., C.P., B.M., H.C., C.A.J.), Johns Hopkins University, Baltimore., Murray B; Division of Cardiology, Department of Medicine (C.T., C.P., B.M., H.C., C.A.J.), Johns Hopkins University, Baltimore., Roter DL; Johns Hopkins Bloomberg School of Public Health (J.S., D.L.R.), Johns Hopkins University, Baltimore., Jamal L; Center for Cancer Research, National Cancer Institute (L.J.), National Institutes of Health, Bethesda, MD.; Department of Bioethics, Clinical Center (L.J.), National Institutes of Health, Bethesda, MD., Calkins H; Division of Cardiology, Department of Medicine (C.T., C.P., B.M., H.C., C.A.J.), Johns Hopkins University, Baltimore., James CA; Division of Cardiology, Department of Medicine (C.T., C.P., B.M., H.C., C.A.J.), Johns Hopkins University, Baltimore.
Jazyk:	angličtina
Zdroj:	Circulation. Genomic and precision medicine [Circ Genom Precis Med] 2023 Dec; Vol. 16 (6), pp. e004133. Date of Electronic Publication: 2023 Nov 28.
DOI:	10.1161/CIRCGEN.123.004133
Abstrakt:	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, R 2 =0.567, P <0.01) and decisional regret (ß=-0.37, R 2 =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. Competing Interests: Disclosures Dr James has received research grants from StrideBio Inc, Eicosos, and Lexeo Therapeutics, received advisory board/consulting fees from Pfizer and Lexeo Therapeutics, and has served as an unpaid consultant for StrideBio and Tenaya Inc. Dr Calkins is a consultant for Medtronic Inc, Biosense Webster, Pfizer, StrideBio, Rocket, and Abbott. B. Murray is a consultant for MyGeneCounsel. C. Tichnell is an unpaid consultant for StrideBio Inc.
Databáze:	MEDLINE
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