Self–proxy agreement and correlates of health-related quality of life in young adults with epilepsy and mild intellectual disabilities

This study investigated health-related quality of life (HRQOL) in young adults with epilepsy and intellectual disabilities. First, agreement between self-reports and proxy reports of HRQOL was examined. Second, medical and psychological contributions to HRQOL were explored. Thirty-six patients were interviewed using the Quality of Life in Epilepsy inventory (QOLIE-31), the Hospital Anxiety and Depression Scale, and the Neuroticism and Extraversion scales of the NEO Five-Factor Inventory. Medical data were taken from files. Professional caregivers completed rephrased QOLIE-31-questionnaires. The perspectives on HRQOL differed systematically: Caregivers underrated their clients’ HRQOL on average. Few correlations with medical characteristics emerged, whereas all psychological variables were strongly related to HRQOL. Neuroticism, Age at Disability Onset, and their interaction explained 71% of the HRQOL variance. Results indicate that proxy reports do not provide valid substitutes for most of the self-reported HRQOL subscales. Psychological treatment of negative affectivity and after critical life events in adolescence may improve HRQOL in young adults with epilepsy and mild intellectual disabilities.