A long-term XXXX perspective after hemispherotomy - A population based study.

@entity1 @entity410 @entity302
PURPOSE: Explore the long-term life situation for Swedish hemispherotomy @entity1 reporting not only @entity410 outcome but also @entity1 ' 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 @entity302 Surgery Register. An independent researcher interviewed @entity1 or parents, using two @entity1 oriented questionnaires. RESULTS: Twenty-nine @entity1 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 @entity410 -free since surgery, and 11/29 (38%) were @entity410 -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 @entity410 -free then; 23% were off antiepileptic medication. In those not @entity410 -free, @entity410 were considered mild or moderate; 11% attended mainstream school and 3/12 adults lived independently. Most parents both of @entity410 -free and non @entity410 -free @entity1 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 @entity1 have a good QoL in the long run and feel that the operation was worthwhile, even when it did not stop @entity410 . The majority had persisting impairments. Proxies were not very concerned about @entity410 , indicating that reduction in @entity410 frequency and/or severity may be an important gain with hemispherotomy.
