CHARACTERIZING DECISION-MAKING SURROUNDING EXERCISE IN ARVC: ANALYSIS OF DECISIONAL CONFLICT, DECISIONAL REGRET, AND SHARED DECISION-MAKING
Johns Hopkins University
Background: Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) is a genetic condition that predisposes individuals to arrythmia, cardiomyopathy, and sudden cardiac death (SCD). Because of associated risk, it is recommended that those diagnosed with or at-risk for ARVC restrict exercise. Guidelines recommend shared decision making (SDM), but there has been little exploration as to whether SDM is happening or its impact on exercise decision-making. Objectives: To 1) describe the extent to which SDM is happening in the population, 2) characterize for whom SDM is happening more or less in the population, and 3) determine if shared decision-making is associated with decisional conflict, decisional regret, and adherence. Methods: Adults diagnosed with ARVC or who have tested positive for genetic ARVC-risk enrolled in the Johns Hopkins ARVC Registry were invited to complete a one-time questionnaire that included exercise history, athlete identity, SDM (SDM-Q-9), decisional conflict (DCS), and decisional regret (DRS). Results: 205/316 invited to the study participated (response rate = 64.8%). 68.0% (n=121) reported clinically significant decisional conflict regarding exercise at the time of ARVC diagnosis or GT (DCS≥25), while 55.1% (n=98) reported clinically significant decisional conflict in the year prior to study completion. Prevalence of decisional regret was also high, with 55.3% (n=99) of participants experiencing moderate to severe decisional regret (DRS≥25). Decisional conflict scores at the time of diagnosis or GT were linearly associated with SDM-Q-9 scores (ß= -.66 R2=0.567, p<0.01). Those diagnosed at 21 or younger reported significantly more SDM (12.8±5.1, p=0.013) and less decisional conflict (-10.1±4.5, p=0.03) than those diagnosed later. ii Discussion: SDM is associated with decreased decisional conflict and decisional regret and is not associated with adherence. This indicates that SDM may be the preferred model of exercise decision-making for those with ARVC and contributes to the literature suggesting that SDM is effective model of decision-making in genetic counseling.
Arrhythmogenic right ventricular cardiomyopathy, genetics, exercise, shared decision-making, decisional conflict, decisional regret