Abstracts

Rationale: Previous studies examining factors associated with children s health-related quality of life (HRQL) have been almost exclusively cross-sectional and have focused mainly on clinical characteristics of epilepsy. Prospective studies with multiple assessments that can identify predictors and not simply correlates of HRQL, including parent and family variables, are lacking in paediatric epilepsy. The objective of this research was to identify baseline child, parent, and family predictors of HRQL 24 months after epilepsy diagnosis in children 4-12 years of age newly diagnosed with epilepsy. Methods: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a national prospective study of children 4-12 years old with new-onset epilepsy followed for 24 months. Parental (age, marital status, education, employment, depressive symptoms), child (age, sex, seizure type, epilepsy classification, duration, medication use, severity), and family (functioning, resources, demands, income) variables were examined using parent and neurologist report at baseline, 6, 12, and 24 months. Child HRQL was measured with the Quality of Life in Childhood Epilepsy (QOLCE). A backwards, stepwise regression approach was used to identify predictors of 24-month HRQL using baseline data. Results: A total of 374 families completed the baseline survey (response rate 82%) and 282 (62%) completed the 24-month survey. At baseline, children had a mean age (standard deviation) of 7.5 (2.3) years and 52% were male. Over 60% had partial seizures and two-thirds were currently prescribed at least one antiepileptic drug (AED). The mean score on the QOLCE was 70.5 (13.9). The final predictive model for better HRQL at 24 months was: higher QOLCE scores at baseline (p<0.001), fewer AEDs prescribed (p=0.10), absence of cognitive problems (p<0.001), family functioning (p=0.04) and lower family demands (p=0.002). The data fit the model well (F5,223=36.06; p<0.001) and accounted for nearly half the variation observed in QOLCE scores at 24 months (r2=0.45; p<0.001). Child characteristics of age, gender, age at onset, type of seizures and severity of epilepsy did not predict HRQL at 24 months.Conclusions: This is the first study to prospectively identify predictors of HRQL in children with epilepsy. This research demonstrated that HRQL at 24 months among children with newly diagnosed epilepsy can be predicted by baseline HRQL, AEDs prescribed, presence of child cognitive problems, worse family functioning, and more family demands.. This result may be useful for health care professionals in the paediatric epilepsy setting to identify children at risk for compromised HRQL early in the course of epilepsy. There may be value in adopting a family centered approach that could include referrals to supportive resources such as an epilepsy support center, social worker, or family counseling targeting those with children at high risk for poor HRQL immediately following diagnosis.