1st Department of Cardiology, Medical University of Warsaw, Warsaw, Poland.
Cardiology Department, Hospital da Luz Arrabida, V. N. Gaia, Portugal.
Europace. 2023 Mar 30;25(3):1144-1151. doi: 10.1093/europace/euac275.
Information provided to patients prior to implantable cardioverter-defibrillator (ICD) insertion and their participation in the decision-making process are crucial for understanding ICD function and accepting this lifelong therapy. The aim of this study is to evaluate the extent to which different aspects related to ICD and quality of life were transmitted to patients prior to ICD implantation.
Prospective, multicenter European study with an online questionnaire initiated by the European Heart Rhythm Association. The questionnaire was filled-in directly and personally by the ICD patients who were invited to participate. A total of 1809 patients (majority in their 40s-70s, with 624 women, 34.5%) from 10 European countries participated in the study. The median time from first ICD implantation was 5 years (interquartile range 2-10). Overall, 1155 patients (71.5%) felt optimally informed at the time of device implantation, however many respondents received no information about ICD-related complications (n = 801, 49.6%), driving restrictions (n = 718, 44.5%), and possibility of end-of-life ICD deactivation (n = 408, 25.4%). Of note, women were less frequently involved in the decision-making process than men (47.3% vs. 55.9%, P = 0.003) and reported to be less often optimally informed before ICD implantation than men (61.2% vs. 76.8%, P < 0.001). More women mentioned the desire to have learned more about ICD therapy and the benefit/risk balance (45.4% vs. 33.7% of men; P < 0.001).
This patient-based evaluation provides alarming findings on the lack of information provided to patients prior ICD implantation, particularly for women.
在植入式心脏复律除颤器（ICD）植入前向患者提供信息以及让他们参与决策过程对于了解 ICD 功能和接受这种终身治疗至关重要。本研究的目的是评估在 ICD 植入前向患者传递与 ICD 和生活质量相关的不同方面的程度。
这是一项由欧洲心脏节律协会发起的、具有前瞻性的、多中心的、基于在线问卷的欧洲研究。该问卷由受邀参与的 ICD 患者直接和亲自填写。共有来自 10 个欧洲国家的 1809 名患者（大多数为 40 多岁至 70 多岁，其中 624 名为女性，占 34.5%）参与了这项研究。首次 ICD 植入后的中位数时间为 5 年（四分位间距 2-10 年）。总体而言，有 1155 名患者（71.5%）在装置植入时感觉得到了最佳信息，但许多受访者没有收到有关 ICD 相关并发症（n = 801，49.6%）、驾驶限制（n = 718，44.5%）和生命末期 ICD 停用可能性（n = 408，25.4%）的信息。值得注意的是，与男性相比，女性在决策过程中参与较少（47.3%比 55.9%，P = 0.003），且在 ICD 植入前的信息获取方面，女性不如男性充分（61.2%比 76.8%，P < 0.001）。更多的女性表示希望更多地了解 ICD 治疗和获益/风险平衡（45.4%比 33.7%的男性；P < 0.001）。
这项基于患者的评估结果表明，在 ICD 植入前向患者提供信息方面存在严重不足，特别是对女性患者。
