Best clinical and research practice in adults with an intellectual disability

Though the prevalence of epilepsies is substantially higher in people with intellectual disability (ID) compared with the general population, little is known of the psychosocial burden of epilepsy and adjustment and their respective determinants in this important population. In most modern societies, adult life with an ID is characterized by diminished self-determination, autonomous function, and life choices. These factors alone are known to be critically linked to the individual’s overall quality of life. The task is to identify additional burdens attributable to coexisting epilepsy. This article addresses the significance, for people with ID who have epilepsy, of the many different factors, including seizure or epilepsy-related parameters, antiepileptic medication, coexisting motor and sensory impairments, and psychopathological and behavioral disorders, that can impact their quality of life. Discussion also covers the methodological difficulties in published studies, and, finally, proposals are outlined for future research in this field.