Characterizing Decision-Making Surrounding Exercise in ARVC: Analysis of Decisional Conflict, Decisional Regret, and Shared Decision-Making
Jessica Sweeney, Crystal Tichnell, Susan Christian, Catherine Pendelton, Brittney Murray, Debra L. Roter, Leila Jamal, Hugh Calkins, Cynthia A. James- General Medicine
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 scale (DCS), and decisional regret (DRS) 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), DCS, and DRS.
Results:
The response rate was 64.8%. Two-thirds of participants (68.0%, n=121) reported clinically significant DCS regarding exercise at diagnosis/genetic testing (DCS≥25), and half (55.1%, n=98) in the past year. Prevalence of DRS was also high with 55.3% (n=99) reporting moderate to severe DRS (DRS≥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 DCS (ß=−0.66, R 2 =0.567, P <0.01) and DRS (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 preceding year ( P =0.56; P =0.34, respectively).
Conclusions:
SDM is associated with lower DCS and DRS; yet, no difference in postdiagnosis exercise. Our data thus support SDM as the preferred model for exercise discussions for ARVC.