Quality of life in pediatric patients with implantable cardioverter defibrillators

Psychosocial and quality-of-life (QOL) outcomes in adult patients with implantable cardioverter-defibrillators (ICDs) are well studied. Minimal research exists regarding pediatric adjustment, despite a potentially more challenging adjustment process. The purpose of the present study was to examine psychosocial and QOL functioning of pediatric ICD patients from patient and parent self-reports. Children and primary caregiver dyads from several university hospitals were analyzed using the PedsQL, the Device Severity Index, the ICD and Avoidance Survey, and demographic information. Sixty children (25 female, 35 male) were enrolled. The present pediatric sample reported lower psychosocial and physical QOL scores than healthy children's normative scores. In comparison with a sample of chronically ill children, pediatric ICD patients reported lower physical QOL. Parent-observed QOL reports revealed lower psychosocial and physical QOL than parent-observed healthy norms and lower psychosocial and physical QOL than chronically ill norms. There were no QOL differences by ICD shocks or medical severity. Female patients reported lower psychosocial, physical, and cardiac QOL scores. Children reported better QOL than parent observations on psychosocial and physical health. Finally, 84.7% of children reported avoidance behaviors since ICD implantation, with female children avoiding places more than male children. In conclusion, pediatric ICD patients are comparable to children with other chronic illnesses with the exception of lower physical QOL. Similar to adult samples, female children reported poorer QOL and were more likely to engage in avoidance behaviors. Patients indicated better QOL perceptions than their parents' reports. ICD discharges and medical severity did not negatively affect QOL.