Patient Preferences in Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) Screening and ICD Implantation: Canadian ARVC Registry Substudy

Background: Arrhythmogenic right ventricular cardiomyopathy (ARVC) is typically diagnosed following an arrhythmic event or during screening after a family member experiences sudden cardiac death. Implantation of a defibrillator (ICD) improves survival but can be associated with morbidity and risks, an important consideration within a shared decision-making context. This study examined patient decisional needs and preferences surrounding ARVC screening and prophylactic ICD implantation. Methods: This Canadian ARVC registry substudy included 20 new patients and/or families offered ARVC screening (the screen group), and 27 diagnosed ARVC patients who were offered an ICD. Measures included the following: the Decisional Conflict Scale; preference and benefit-risk visual analogue scales; the Medical Outcomes Study Short Form-36 (SF-36); and exercise restriction. Descriptive analysis was employed, and results are reported as mean (standard deviation) or proportions. Results: ICD patients reported having lower decisional conflict scores-19.6 (13.6) compared to the screen group patients-33.1 (32.2). The visual analogue scale results showed lower benefit and risk clarity scores for screen group patients-6.6 (3.6)-compared to those offered ICD implantation-7.4 (2.6). More screen group patients (55%) reported restricting exercise than did ICD patients (30%). In both groups, the Medical Outcomes Study Short Form-36 Physical Component Summary scores were higher than population norms-50 (standard deviation 10): the screen group, 52.0 (8.8); the ICD group, 54.1 (7.4), and the Mental Component Summary scores were slightly lower-the screen group, 47.7 (10.8); the ICD group, 49.7 (8.9). Conclusions: Patients undergoing ARVC screening reported greater decisional conflict and lower benefit and risk clarity compared to patients diagnosed with ARVC who were offered an ICD. Screen group patients were more restrictive in their exercise. Understanding patient preferences and needs during ARVC screening and ICD candidacy can assist in improving decision support with patients and families.