Purpose: To evaluate the burden of illness of childhood epilepsy on patient, care giver, and society, representative incidence cohorts must be followed longitudinally. Case ascertainment through pediatricians and neurologists would be a valid method if family physicians refered all new cases of childhood epilepsy. The study objective was to determine whether family physicians' referral patterns in Southwestern Ontario make it possible to conduct a population-based incidence study of childhood epilepsy by sampling only from specialists' practices.
Methods: Of the 1,718 family physicians practicing in Southwestern Ontario, a systematic sample participated in a mailed survey. Case simulations describing seven types of childhood seizures were presented to physicians with instructions to respond as to whether they would investigate/manage without referral; refer to a specialist only if problems occurred; or refer to a specialist always.
Results: Of 214 family physicians, 185 (86.4%) returned completed surveys; 86% would not refer a child with a febrile seizure. Referral to a specialist would be made always by 93% of family physicians for patients with status epilepticus, 95% for worsening partial epilepsy, 82% for a first, brief, generalized clonic seizure, 80% for absence epilepsy, and 99% for neonatal seizures. Only 50% of family physicians would always refer a neurodevelopmentally abnormal child with generalized clonic epilepsy, but a further 37% would refer if problems occurred.
Conclusions: It is feasible to recruit a representative population-based cohort of recently diagnosed patients for epidemiologic studies of childhood epilepsy by surveying pediatricians and neurologists. These survey results could be used to adjust estimates of incidence obtained through specialists' practices for the bias in case ascertainment that may result from this practical method.