Authors :
Presenting Author: Natalie Zeaiter, BSc – The University of Sydney and Children's Hospital Westmead
Olga Teo, BSc – Children's Hospital Westmead
Caspar Muenstermann, Statistician – The University of Sydney and Children's Hospital Westmead
Russell C Dale, MRCPCH, PhD – The University of Sydney and Children's Hospital Westmead
Sachin Gupta, FRACP – Children's Hospital Westmead
Chong Wong, FRACP, PhD – The University of Sydney and Children's Hospital Westmead
mark dexter, FRACP – Children's Hospital Westmead
Deepak Gill, FRACP – The University of Sydney and Children's Hospital Westmead
Kavitha Kothur, FRACP, PhD – The University of Sydney and Children's Hospital Westmead
Rationale:
Epilepsy surgery effectively improves seizure control, and family experiences offer insights into its real-world impacts. However, there is limited data focusing on the subjective experiences of families before and after surgery, both in the short term and long term.
Aim
This study aims to explore the journeys, priorities, and satisfaction outcomes of families with children undergoing evaluation for epilepsy surgery.
Methods:
This mixed-methods study surveyed patients evaluated for epilepsy surgery (2020–2024), examining referrals, priorities, and expectations (n = 76), and post-surgical outcomes and satisfaction (n = 39). Logistic regression identified factors influencing decisions and satisfaction; qualitative analysis highlighted key themes.
Results:
The mean age of epilepsy onset was 55.04 and age at surgery was 89 months(n=39). Families with sufficient support and understanding of surgery benefits (OR=5.95), along with those on more anti-seizure medications (OR=1.3), showed higher odds of proceeding with surgery, while those feeling inadequately informed had lower odds of proceeding (OR=0.28, p< 0.05).Challenges encountered during the surgical evaluation included uncertainty about outcomes, fear of surgical risks and complications, and difficulties in decision-making. Postoperatively, 52% of participants were seizure-free and 23% had reduced seizures, with quality of life improving in most areas except executive function. Overall, 66.6% of families were satisfied, and 15.4% were somewhat satisfied. Satisfaction was higher among those informed about rehabilitation (β = 14.23) and surgery benefits (β = 16.95, p = 0.03). Providers recommended peer support during evaluation and follow-up.