A Prospective Longitudinal Study of Health-Related Quality of Life and Psychological Wellbeing after an Implantable Cardioverter Defibrillator in Patients with Genetic Heart Diseases
ABSTRACTBackgroundGenetic heart diseases often affect young people, can be clinically heterogeneous and pose an increased risk of sudden cardiac death (SCD). The implantable cardioverter defibrillator (ICD) is a lifesaving therapy. Impacts on prospective and long-term psychological and health-related quality of life (HR-QoL) after ICD implant in patients with genetic heart diseases are unknown. We investigate the psychological functioning and HR-QoL over time in patients with genetic heart diseases who receive an ICD, and identify risk factors for poor psychological functioning and HR-QoL.MethodsA longitudinal, prospective study design was used. Patients attending a specialised clinic and diagnosed with a genetic heart disease, for which they received an ICD between May 2012 and January 2015, were eligible. Baseline surveys were completed prior to ICD implantation with five-year follow-up after ICD implant. We measured psychological functioning (Hospital Anxiety Depression Scale, Florida Shock Anxiety Scale), HR-QoL (Short-Form 36v2) and device acceptance (Florida Patient Acceptance Scale).ResultsThere were 40 patients with an inherited cardiomyopathy or arrhythmia syndrome included (mean age 46.3 ± 14.2 years; 65.0% males). Mean psychological and HR-QoL measures were within normative ranges during follow-up. After 12 months, 33.3% and 19.4% of participants showed clinically elevated levels of anxiety and depression, respectively. Longitudinal mixed effect analysis showed significant improvements from baseline to first follow-up for the overall cohort, with variability increasing after 36 months. Low education and female gender predicted worse mental HR-QoL and anxiety over time, while comorbidities predicted depression and worse physical HR-QoL.ConclusionWhile the majority of patients with a genetic heart disease adjust well to their ICD implant, a subset of patients’ experience poor psychological and HR-QoL outcomes.