title: Disability due to restrictions in childhood epilepsy.
abstract: Parents and doctors impose restrictions on children with epilepsy to avoid seizure-related injuries. We intended to quantify disability due to such restrictions by using a newly developed parent-completed 10-item scale (The Hague Restrictions in Childhood Epilepsy Scale, HARCES). Parents reported disability on at least one item of the HARCES in 83% of 122 children with epilepsy and a remission from seizures for less than 1 year. Psychometric analysis of the scale's reliability demonstrated good internal consistency and retest stability. Its validity was supported by the association between HARCES scores and the physicians' advice imposing restrictions. We found no substantial association with such variables as seizure type, short-term remission, or seizure activity. These findings suggest that in children with recurrent seizures, restrictions were probably not optimally adapted to seizure-related risks. A repeat test after 1 year showed that a seizure remission of more than 1 year substantially reduced restrictions, which is probably associated with an improvement in quality of life.
authors.affiliation: Department of Child Neurology, Westeinde Hospital, The Hague, The Netherlands.
authors.forename: H A
authors.initials: HA
authors.lastname: Carpay
authors.forename: J
authors.initials: J
authors.lastname: Vermeulen
authors.forename: H
authors.initials: H
authors.lastname: Stroink
authors.forename: O F
authors.initials: OF
authors.lastname: Brouwer
authors.forename: A C
authors.initials: AC
authors.lastname: Peters
authors.forename: C A
authors.initials: CA
authors.lastname: van Donselaar
authors.forename: A P
authors.initials: AP
authors.lastname: Aldenkamp
authors.forename: W F
authors.initials: WF
authors.lastname: Arts
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D004185:Disability Evaluation; D006233:Persons with Disabilities; D004827:Epilepsy; D005260:Female; D006801:Humans; D008297:Male; D009043:Motor Activity; D011594:Psychometrics; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires