Shocking. Expectations and beliefs on life with a defibrillator

Abstract Introduction Although implantable cardioverter defibrillator (ICD) and implantable cardiac resynchronization therapy defibrillator (CRT-D) play a life-saving role, patient’s understanding of their device warrants a thorough analysis and implementation of educational programs. Purpose To study patient’s understanding and expectations regarding ICDs and CRT-Ds. Methods Using convenience sampling method, this cross-sectional study was conducted on a sample of 129 patients referred to the pacing clinic or emergency department of a tertiary hospital, from October to November of 2023. The data were collected directly from the patient's clinical files and through in person or phone interviews conducted according to a pre-specified inquiry form, that included Florida Shock Anxiety Scale and the Implantable Cardioverter-Defibrillator Concerns questionnaire. Statistical analysis was performed using SPSS 29. Results Among the 129 patients that agreed to answer the full inquiry: the majority were male (79.8%) and the average age was 63.3 ± 10.6 years [25; 80]. Comorbidities were: 89.1% heart failure, 81.4% dyslipidemia, 77.5% hypertension, 55.0% ischemic heart disease, 51.9% atrial fibrillation. Device was an ICD in 59.7% or a CRT-D in 40.3% of the patients; the majority (84.5%) received the device in primary prevention, among these, ischemic disease (48.1%) and dilated myocardiopathy (36.4%) were the top substrates. Of the study patients, 70.5% claim to have never experienced any device shocks. Regarding the Florida Shock Anxiety Scale, the average score was 1.9 ± 0.6; among the 10 items queried, the sentences with the higher score (more worried) were: "I worry about the ICD not firing sometime when it should" (2.7 ± 1.1) and "When I notice my heart beating rapidly, I worry that the ICD will fire" (2.5 ± 1.0); while those with lower score (less worried) were: "I am afraid to touch others for fear I’ll shock them if the ICD fires" (1.4 ± 0.6) and "I do not engage in sexual activities because it may cause my ICD to fire" (1.4 ± 0.6). On the Implantable Cardioverter-Defibrillator Concerns questionnaire, the average score was 2.0 ± 0.5; among the 20 items queried, those with the higher score (more worried) were: "My ICD not working when I need it to" (2.8 ± 0.9) and "Problems occurring with my ICD, eg, battery failure" (2.7 ± 0.8); while those with lower score (less worried) were: "The amount of time I spend thinking about my heart condition and having an ICD" (1.3 ± 0.5) and "Being a burden on my partner / family" (1.2 ± 0.5). Conclusion The results obtained from this analysis are of particular interest to better define patient’s expectations regarding defibrillator devices; ranking higher on aspects that worry patients are those related with device malfunction and physical activity leading to shock firing; on the other end of the spectrum, patients seldom worry about shock transmission to others and the time spent thinking about their disease.