A long-term patient perspective after hemispherotomy--a population based study

Abstract

Purpose: Explore the long-term life situation for Swedish hemispherotomy patients reporting not only seizure outcome but also patients' perspectives on function, quality of life (QoL) and satisfaction with the surgery.

Methods: This population based study uses prospectively collected data from the Swedish National Epilepsy Surgery Register. An independent researcher interviewed patients or parents, using two patient oriented questionnaires.

Results: Twenty-nine patients underwent hemispherotomy in Sweden after 1995 and had a five- or ten-year follow-up. At the 2-year follow-up 55% (16/29) were seizure-free since surgery, and 11/29 (38%) were seizure-free at the long term follow up. Twenty-six (90%) participated in this study. Median time to interview was 13.5 years; 9/26 (35%) were seizure-free then; 23% were off antiepileptic medication. In those not seizure-free, seizures were considered mild or moderate; 11% attended mainstream school and 3/12 adults lived independently. Most parents both of seizure-free and non seizure-free patients reported QoL and general health to be very good/good; 73% were satisfied/very satisfied with the hemispherotomy.

Conclusion: In this series there were more long-term recurrences than previously reported. This might be related to the lower level of function of this cohort and higher percentage of developmental aetiologies compared to other series. However, most hemispherotomy patients have a good QoL in the long run and feel that the operation was worthwhile, even when it did not stop seizures. The majority had persisting impairments. Proxies were not very concerned about seizures, indicating that reduction in seizure frequency and/or severity may be an important gain with hemispherotomy.

Keywords: Hemispherotomy; Long-term; Outcome; Patient perspective; Quality of life.