The Capture Gap: Implantable Cardioverter-Defibrillator Quality of Life

Abstract

We aimed to compare salient characteristics and antecedents of quality of life (QOL) in adolescents and young adults with implantable cardioverter-defibrillators (ICDs) from qualitative methods with quantitative measurement of QOL and correlations between QOL (PedsQL) and measured participant characteristics. Concurrent parallel mixed methods design was used to collect survey data from the PedsQL electronic health record, demographic questionnaire, and semistructured interview data. A convenience sample of 16 individuals with ICDs, aged 13 to 25 years, was obtained from a tertiary pediatric facility. Overall QOL and subdomains of physical, psychosocial, and academic/work were examined by PedsQL and visual analog scale. Select demographics were collected to develop a participant profile. Females with ICDs appear to be at risk of poor QOL given some unknown factors. Financial status of the individual and the family was positively related to QOL. For new ICD persons involved in physical activities that must be stopped, peer support appears to improve QOL.

Keywords: adolescent; cardiac disease; implantable cardioverter–defibrillator; mixed methods; young adult.