Referral Patterns of Family Physicians May Allow Population‐Based Incidence Studies of Childhood Epilepsy

Abstract

Summary: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. 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. Key Words: Childhood seizuresIncidence-Family physicians. MethodsDescriptive studies of children with epilepsy suggest a substantial burden of illness beyond the disability of the seizure disorder. Behavior problems, psychiatric disturbances, low self-esteem (3,5), and poor academic performance (1,4) are most notable. The burden of illness is not confined to the children, but extends to other family members (1,2,6,7).There is general acceptance that childhood epilepsy often interferes with the daily lives of patients and their families and that it creates additional financial strain for families because of loss of work time, cost of medication, and travel expenses, but there are no sound empiric estimates of the true impact on quality of life. Measurement tools have recently been developed and are being Accepted September 8, 1998. Address correspondence and reprint requests to Dr. K. N. Speechley at Child Health Research Institute, 800 Commissioners Road East, London, Ontario N6C 2V5, Canada. tested for their ability to quantify appropriately the burden experienced by patients and their families (8). Although previous studies provide some useful descriptive information about potential risk factors for psychosocial morbidity, many of the results are limited by methodologic weaknesses. For example, it was noted (9) that many of the results are based on small unrepresentative samples. There have been a few population-based studies of the relative importance of biologic and clinical risk factors for social outcomes in children with epilepsy (4,lO-12). Understanding both the impact of childhood epilepsy and the risk factors for negative sequelae could provide a rational basis for the allocation of resources to reduce the physical, emotional, and social costs to patients and their families.There have been few studies of the incidence of childhood epilepsy (13)(14)(15)(16)(17)(18)(19)(20), very few of which have been population based (16,20). The available estimates of incidence vary substantially across studies, largely because 225

Do depressive symptoms affect mothers’ reports of child outcomes in children with new-onset epilepsy?

“…However, there are feasibility constraints in designing population-based studies. In the absence of population-based registries for epilepsy to facilitate such studies, Speechley et al [41] demonstrated that it may be feasible to recruit a representative population-based sample of children with epilepsy by targeting pediatric neurologists. In this study, family physicians practicing in southwestern Ontario reported they would refer between 80 and 99% of their patients with childhood epilepsy (depending on the type of seizure and syndrome) to a pediatric neurologist.…”

Health resource use in epilepsy: Significant disparities by age, gender, and aboriginal status

“…A longer study period would have likely shown a much higher neurologist visit rate. In fact, a prior Canadian study found that over 80% of the children with epilepsy are referred to a neurologist (Nixon Speechley et al, 1999). In addition, only prevalent cases were used.…”

Risk factors for health‐related quality of life in children with epilepsy: A meta‐analysis

“…Employing population-based sampling procedures that include multiple sites will facilitate the recruitment of a representative sample of the pediatric epilepsy population. 24 Furthermore, researchers interested in HRQL should avoid restricting their samples based on child characteristics, particularly those relating to intellectual or cognitive ability. Despite the high prevalence of cognitive deficit among children with epilepsy, 25 over half of the studies included in this meta-analysis excluded such children.…”