title: Caregiver measures for seizure control, efficacy, and tolerability of antiepileptic drugs for childhood epilepsy: results of a preference survey.
abstract: 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.
authors.affiliation: Comprehensive Epilepsy Program, Cook Children's Medical Center, Fort Worth, TX, USA. Scott.perry@cookchildrens.org
authors.forename: M Scott
authors.initials: MS
authors.lastname: Perry
authors.forename: Charlotte
authors.initials: C
authors.lastname: Swint
authors.forename: Jonathan
authors.initials: J
authors.lastname: Hawley
authors.forename: Sue
authors.initials: S
authors.lastname: Kohler
authors.forename: Sarah
authors.initials: S
authors.lastname: Blake
authors.forename: Kimberly
authors.initials: K
authors.lastname: Rask
authors.forename: John
authors.initials: J
authors.lastname: Sladky
authors.forename: Nicolas
authors.initials: N
authors.lastname: Krawiecki
mesh_terms: D000293:Adolescent; D000927:Anticonvulsants / Q000627:therapeutic use*; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D002986:Clinical Trials as Topic; D004827:Epilepsy / Q000188:drug therapy* / Q000523:psychology*; D005260:Female; D006306:Health Surveys; D006801:Humans; D007223:Infant; D008297:Male; D016896:Treatment Outcome
chemical_list: D000927:Anticonvulsants