Carroll Sandra L, Pullman Daryl, Gardner Martin, Krahn Andrew D, Healey Jeff S
School of Nursing, McMaster University, Hamilton, Ontario, Canada.
Population Health Research Institute, Hamilton, Ontario, Canada.
CJC Open. 2024 Oct 24;7(1):27-34. doi: 10.1016/j.cjco.2024.10.007. eCollection 2025 Jan.
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.
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.
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).
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.
致心律失常性右室心肌病（ARVC）通常在心律失常事件发生后或家庭成员发生心源性猝死并进行筛查时被诊断出来。植入除颤器（ICD）可提高生存率，但可能伴有发病风险，这是共同决策过程中需要重点考虑的因素。本研究调查了患者围绕ARVC筛查和预防性ICD植入的决策需求及偏好。
这项加拿大ARVC注册研究的子研究纳入了20名接受ARVC筛查的新患者和/或家庭（筛查组），以及27名被建议植入ICD的已确诊ARVC患者。测量指标包括：决策冲突量表；偏好及获益-风险视觉模拟量表；医学结局研究简明健康调查36项量表（SF-36）；以及运动限制情况。采用描述性分析，结果以均值（标准差）或比例形式呈现。
与筛查组患者（决策冲突评分为33.1[32.2]）相比，ICD患者报告的决策冲突得分较低，为19.6（13.6）。视觉模拟量表结果显示，筛查组患者（获益和风险清晰度评分为6.6[3.6]）的获益和风险清晰度得分低于接受ICD植入的患者（7.4[2.6]）。报告限制运动的筛查组患者（55%）多于ICD患者（30%）。在两组中，医学结局研究简明健康调查36项量表的身体成分汇总得分均高于人群常模——50（标准差10）：筛查组为52.0（8.8）；ICD组为54.1（7.4），而精神成分汇总得分略低——筛查组为47.7（10.8）；ICD组为49.7（8.9）。
与被建议植入ICD的已确诊ARVC患者相比，接受ARVC筛查的患者报告的决策冲突更大，获益和风险清晰度更低。筛查组患者在运动方面限制更多。了解ARVC筛查和ICD候选资格评估期间患者的偏好和需求有助于改善对患者及其家庭的决策支持。
