Major gaps in the information provided to patients before implantation of cardioverter defibrillators: a prospective patient European evaluation

Abstract

Aims 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. Methods and results 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). Conclusions This patient-based evaluation provides alarming findings on the lack of information provided to patients prior ICD implantation, particularly for women.

Preditores de Qualidade de Vida, Ansiedade e Aceitação em Pacientes com Cardioversor-Desfibrilador Implantável

“…Esses achados sugerem que o tipo de procedimento, implantes iniciais ou reoperações, não teve impacto nos resultados do estudo, de forma semelhante ao que tem sido reportado na literatura. 7 - 12 …”

“…A identificação de fatores que possam discriminar subgrupos com maior risco de apresentar desfechos psicossociais desfavoráveis ainda foi pouco explorada na literatura e os resultados variam consideravelmente entre os estudos. Até o presente momento, a ocorrência de terapias de choque do CDI, 7 condições psicológicas pré-existentes como depressão, 8 personalidade do tipo D 9 e transtorno de ansiedade generalizada, 4 sexo feminino, 10 idade superior a 60 anos, 11 a falta de suporte social 9 e de conhecimento sobre a doença e o dispositivo 12 foram os principais fatores associados ao impacto negativo do CDI sob a perspectiva dos pacientes.…”

Long-term cardiovascular outcomes among immigrants and non-immigrants in cardiac resynchronization therapy: a nationwide study

“…Even though access to the healthcare system is, roughly, equal for all Danish citizens, immigrants may still encounter a broad spectrum of obstacles. First, a recent study by Januszkiewicz et al 19 found that the information provided to patients before implantation of an ICD was sparse hindering the patients in being a part of the decision-making process. This finding could be even more relevant for immigrants who might face social/cultural barriers such as understanding the native language and/or have different perceptions of illness which might lead to misinterpretation of the information regarding their cardiovascular condition and the treatment modalities involved.…”

Regional disparity on patient characteristics and perceptions after implantable cardioverter-defibrillator implantation: results from an EHRA patient survey

“…Candidates for the ICD must be thoroughly explained the implications, benefits, and risks of the device, the impact it may have on their quality of life, and the likelihood that the device may save their lives, in order to improve their acceptance of the device. In our previous paper, 7 we reported that most ICD patients would have liked to receive information about living with the device during face-to-face appointments, through Internet content or printed material. Patient associations and support groups for ICD recipients provide aid and information about cardiac implantable electronic devices, and we have shown that patients find these activities helpful.…”

“… 1 , 6 In a previous report, we identified major gaps regarding patients’ knowledge and empowerment in this process. 7 Most of the research on European regional differences in ICD therapy focused on implantation rates and predictors of ICD underutilization. 8–10 However, data on differences in quality of life, patient engagement, and information provided are scarce.…”