Parents’ and physicians’ perceptions of childhood epilepsy

STATEMENT OF THE PROBLEM There is increasing interest in reducing burden of illness in families with childhood epilepsy. Evidence suggests that burden of illness is more related to parents' perception of seizure control than actual seizure control. This study examined the extent to which parents could describe their children's epilepsy and its impact. The degree of concordance between parents' and physicians' perceptions of epilepsy, and its effect on parents' satisfaction with care was also examined. METHOD The study involved 37 parents and 1 paediatric neurologist. A questionnaire measured parents' perceptions of seizures and satisfaction with care. A physician questionnaire was piloted for comparison with parent responses. RESULTS Parents were able to describe and distinguish seizure types, characteristics and impact of epilepsy. Results indicate a low degree of concordance between parents' and physician's perceptions for global, medical and everyday aspects of epilepsy. Preliminary evidence suggests that satisfaction with care may be positively related to degree of concordance. CONCLUSIONS It is feasible to examine burden of illness from the parents' perspective. More attention should be paid to the parent-physician relationship in order for physicians to appreciate parents' perceptions. Future research is needed to replicate the findings in a larger sample of parents and paediatric neurologists.