The perceived health of children with epilepsy, sense of control, and support for their families.

Aim: The aim of this study was to evaluate the perceived health of children with epilepsy as experienced by the respondents to a questionnaire, to assess the sense of control over their child's epilepsy, and how much support they feel they received in various environments.

Methods: In this observational study, the data were collected using a questionnaire that was sent to families of children with epilepsy, who were treated at University Children's Hospital in Ljubljana, Slovenia from January to September 2016. The questionnaire consisted of 29 questions related to their epilepsy.

Results: There were 1198 patients who met the entry criteria for the study and were sent the questionnaire, of which 181 (15.1%) responded. The diagnosis of epilepsy was established in 91.2% of patients (8.8% were patients after a first unprovoked seizure), of which drug-resistant epilepsy was reported in 33.3%. Patients had epilepsy diagnosed for a mean of 4.9 ± 4.4 years. Of all patients, 82.4% of patients were taking antiepileptic drugs (AEDs) at the time of inquiry. The longer the patient had epilepsy diagnosed, the lower was the perceived health (p = 0.004). Patients with pharmacoresistant epilepsy, those who had seizures, and those who were receiving AEDs had significantly lower scores of perceived health compared with those who did not (p < 0.001; p < 0.001; and p = 0.016, respectively). Of all responders, 79.8% responded that they feel that they have their child's condition under control. The child's condition was considered under control more often if the child had no reported seizures (p < 0.001) and if the family had enough support in the health system (p = 0.002) or psychological support (p = 0.005). Patients with pharmacoresistant epilepsy more often replied that they do not have enough support in the health system (p = 0.006).

Conclusions: Our study suggests that the presence of seizures, pharmacoresistant epilepsy, years of epilepsy diagnosis, and prescription of AEDs have a significant negative effect on the perceived health of children with epilepsy. Enhancement of the support families received in different environments can offer an opportunity to improve the sense of caregivers' control over child's epilepsy.