Department of Neurology, Division of Clinical Neurophysiology, Massachusetts General Hospital, Bigelow 12, 55 Fruit Street, Boston, MA, 02114 USA.
Purpose: Parental perceptions regarding the outcome of epilepsy surgery in their children were assessed preoperatively via telephone survey.
Methods: Twenty-seven parents - sixteen mothers (MO), eleven fathers (FA) - of sixteen children (nine boys, seven girls; ages 6 months-18 years) with intractable epilepsy (refractory to >= 3 anticonvulsants) were interviewed. Twenty-four questions were posed during single, 20-minute sessions to both parents.
Results: A majority of parents (63% MO, 82% FA) would consider epilepsy surgery successful if it achieved >= 75% seizure reduction. Incomplete seizure control would even be acceptable if the overall number of seizures were reduced (69% MO, 18% FA). In order to gain seizure remissions, behavioral deterioration would be accepted (57% MO, 50% FA). Less than total seizure control would be accepted if surgery produced behavioral improvement
(57% MO, 51% FA, Kappa > 0.6). For seizure reduction, parents would accept: visual field deficits (82% MO, 67% FA), short-term memory deficits (33% MO, 75% FA), and speech problems (56% MO, 17% FA).
Conclusion: Parents of children with medically-resistant seizures perceive adverse physical and behavioral consequences of epilepsy surgery to be acceptable if there is adequate seizure control. Their acceptance of postoperative deficits underscores the magnitude of the handicap produced by chronic childhood epilepsy.