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Delay in pediatric epilepsy surgery: A caregiver's perspective.
Alice Shen1, Kara T Quaid2, Brenda E Porter3
1Perelman School of Medicine at the University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA 19104, USA.
Many caregivers of pediatric epilepsy surgery patients wished their child had surgery earlier, especially if the duration of epilepsy was longer. Improving education on epilepsy surgery benefits and risks is needed.
Area of Science:
- Pediatric Neurology
- Neurosurgery
- Epileptology
Background:
- Epilepsy surgery timing is complex for pediatric patients.
- A structured pathway for surgical decision-making is lacking.
- Caregiver perspectives on timing and outcomes are crucial.
Purpose of the Study:
- To evaluate caregiver satisfaction with the timing of pediatric epilepsy surgery.
- To understand caregiver acceptance of potential deficits post-surgery.
- To identify factors influencing retrospective views on surgical timing.
Main Methods:
- Survey administered to caregivers of pediatric epilepsy surgery patients.
- Analysis of responses regarding perceived optimal surgical timing.
- Comparison of epilepsy duration between groups with differing timing satisfaction.
- Assessment of caregiver willingness to accept seizure freedom likelihood and functional deficits.
Main Results:
- 30 caregivers wished for earlier surgery; 20 felt timing was appropriate.
- Longer epilepsy duration correlated with a desire for earlier surgery (p=0.0034).
- Caregivers accepted lower seizure freedom rates and functional deficits (motor, cognitive, behavioral, language).
Conclusions:
- Caregiver satisfaction with epilepsy surgery timing is influenced by pre-operative epilepsy duration.
- Enhanced caregiver and neurologist education on epilepsy surgery is necessary.
- Streamlining the pathway to epilepsy surgery may improve outcomes and satisfaction.
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