Satisfaction and Seizure Outcome in Tuberous Sclerosis Epilepsy Surgery – a Swedish Population Based Long Term Follow-up
Abstract number :
3.335
Submission category :
9. Surgery / 9C. All Ages
Year :
2022
Submission ID :
2204904
Source :
www.aesnet.org
Presentation date :
12/5/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:27 AM
Authors :
Kevin Pearsson, MD – Dept. of Clinical Sciences Lund, Clinical Sciences Helsingborg, Lund University, Lund, Sweden; Maria Compagno Strandberg, Have read and accepted abstract – MD, PhD, Division of Neurology, Department of Clinical Sciences, Lund University, Sweden; Erik Eklund, Have read and accepted abstract – Associate professor, MD, Department of Clinical Sciences, Lund University, Lund, Sweden; Olof Rask, Have read and accepted abstract – PhD, MD, Department of Clinical Sciences Lund, Psychiatry, Lund University, 22100 Lund, Sweden; Kristina Källén, Have read and accepted abstract – Professor, MD, Dept. of Clinical Sciences Lund, Clinical Sciences Helsingborg, Lund University, Lund, Sweden
Rationale: Epilepsy surgery is an optional treatment for therapy resistant seizures in tuberous sclerosis (TS). To date, there is no national study on long-term outcomes of seizures and patient reported measurements (PROM) in this population.
Methods: Individuals with TS and previous epilepsy surgery were identified through the Swedish National Epilepsy Surgery Registry (SNESUR), with prospective collected data filed since 1995. Demographic and seizure data was retrieved from SNESUR and medical records, and PROM data by a structured phone-interview regarding satisfaction and perceived benefit of surgery. The last interview item was “Would you recommend others with tuberous sclerosis and epilepsy to undergo epilepsy surgery?”
Results: Median follow-up was 6 y 8 m (range, 3 y 1 m – 15 y 1 m) for tuberectomies (TE, n=15) and 3 y 6 m (range, 2-10 y) for corpus callosotomies (CC, n=7). At long-term follow-up, 8/15 of TE participants were seizure free and 4/7 of the callosotomies were free from drop-attacks, the main target for this palliative procedure. All TE and 5/7 of the CC responded to the interview, answers were provided by caregivers in 18/20. Among TE, 6/8 seizure-free participants were highly satisfied and experienced benefit from surgery. However, two seizure-free participants were unsatisfied and did not consider surgery as beneficial, and they would not recommend surgery to others with TS. Among TE with continued seizure, 3/7 considered the surgery as satisfactory and beneficial. The four with continued seizures had heterogeneous scores between 1-4 on a 5-point Likert-scale for satisfaction, and 2/4 rated the surgery as beneficial or neutral, respectively. Thirteen out of the 15 TE participants would recommend surgery to others with TS. Among respondents with CC, all 3/5 with continued drop attacks felt unsatisfied. One perceived the surgery as harmful but would still recommend epilepsy surgery to others. One was neutral and could not decide regarding recommending surgery. The only participant who would not recommend surgery to others was neutral (Likert-scale 3/5) in satisfaction but still perceived the surgery as beneficial. One respondent who achieved long term freedom from drop-attacks rated the satisfaction as neutral, unable to decide if surgery was beneficial or not as well as recommending surgery to others. The other seizure-free respondent was satisfied, perceived the surgery as beneficial, and would recommend surgery to others.
Conclusions: This national, prospective study confirmed that both TE and CC are effective in tuberous sclerosis. For TE, that satisfaction was overall high, even among individuals who did not achieve seizure-freedom. This indicate that these families value other outcomes than seizure-freedom after epilepsy surgery. For CC, the satisfaction was all over lower and congruent with seizure-outcome, none of the participants considered the surgery as harmful.
Funding: This study was supported by the Stig & Ragna Gorthon Foundation, Margaretahemmet, and Region Skåne.
Surgery