'With the benefit of hindsight': would you opt again for epilepsy surgery performed in childhood?

Abstract

Background: How adolescents and their caregivers look back on epilepsy surgery performed in early life, and whether epilepsy-related restrictions are still in force years after the operation, are insufficiently known.

Aims: To obtain retrospective evaluations of the decision for epilepsy surgery at an early age, and to inventory current epilepsy-related restrictions.

Methods: Of 177 children who underwent epilepsy surgery between 1992 and 2009, 129 could be approached. They and their parents received a rating list inventorying whether, in retrospect, they would opt again for epilepsy surgery, which were motives for their answer, how successful they felt surgery had been and which, if any, epilepsy-related restrictions were still in force.

Results: Forty-one of 44 seizure-free adolescents and 9 of 10 adolescents with current seizures were inclined to (re-)opt for surgery. Parents also would in majority re-opt for surgery. Age at surgery, post-surgical interval, nor type of surgery was statistically significantly related with re-opting for surgery. Seizure-freedom was the paramount motive of seizure-free respondents; respondents with current seizures in majority mentioned amelioration of seizures and/or medication. For parents of children with current seizures, a better developmental perspective was another important motive. Rare hesitation/refusal was related to uncertainties in weighing advantages and disadvantages. Current seizures were no reason to consider surgery as a failure. Among children who were free of both seizures and anti-epileptic drugs, 42% lived with restrictions.

Conclusions: Epilepsy surgery that does not result in seizure freedom is nevertheless felt to be beneficial. Proper advice should prevent meaningless continuation of restrictions.

Keywords: Children; Epilepsy surgery; Long-term; Outcome evaluation; Parents.