Caregiver measures for seizure control, efficacy, and tolerability of antiepileptic drugs for childhood epilepsy: results of a preference survey

Epilepsy & Behavior : E&B
M Scott PerryNicolas Krawiecki


We sought to identify and quantify caregiver-defined characteristics of efficacy related to the perceived success of antiepileptic drug (AED) use. A 22-question survey was designed using physician input, focus groups, and clinical trial endpoints. Responses were pooled and analyzed with regard to seizure type and treatment, categorized as controlled (exposure to 1 AED), adjunctive (exposure to 2 AEDs), or refractory (exposure to ≥3 AEDs). Two hundred ninety-five surveys were completed: 109 (37%) controlled, 84 (28%) adjunctive, and 102 (35%) refractory. Seizure freedom and median seizure reduction >90% maintained for >1 year were reported as the most important indicators of medication efficacy by the majority of respondents. These measures were the same regardless of seizure type or treatment category. Our results demonstrate that current trial design may be inadequate to address the expectations of patients. Incorporating patient-defined AED efficacy measures may improve satisfaction and informed decision making regarding epilepsy treatment.


Feb 24, 2001·Journal of Child Neurology·G M RonenD L Streiner
Mar 26, 2003·Seizure : the Journal of the British Epilepsy Association·B Abou-KhalilM D Privitera
Oct 22, 2005·Acta Neurologica Scandinavica. Supplementum·J W Sander
Aug 29, 2006·Epilepsy & Behavior : E&B·Rajesh C SachdeoKevin McCague
May 14, 2010·Epilepsy & Behavior : E&B·Elinor Ben-MenachemFrank Gilliam

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May 15, 2013·Pediatric Neurology·Sigride Thome-Souza, Kette D Valente
May 9, 2012·Epilepsy & Behavior : E&B·James W McAuleyMona Prasad

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