The perceived health of children with epilepsy, sense of control, and support for their families Eva Vrščaj a , Mirjana Perković Benedik a,b , Jasna Oražem Mrak a , Neli Bizjak a , Damjan Osredkar a,b, ⁎ a Department of Pediatric Neurology, University Children's Hospital, University Medical Centre Ljubljana, Slovenia b Faculty of Medicine, University of Ljubljana, Slovenia abstract article info Article history: Received 4 April 2020 Revised 25 August 2020 Accepted 27 August 2020 Available online xxxx 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 di- agnosed 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 signif- icantly 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 diagno- sis, and prescription of AEDs have a significant negative effect on the perceived health of children with epilepsy. En- hancement of the support families received in different environments can offer an opportunity to improve the sense of caregivers' control over child's epilepsy. © 2020 Elsevier Inc. All rights reserved. Keywords: Epilepsy Children Perceived health Control Support 1. Introduction Epilepsy is globally the fifth most burdening neurological disease [1], with the annual cumulative incidence of 67.8 per 100,000 persons [2] and the incidence of epilepsy in children in the range of 41–187/ 100,000 [3]. In majority of patients, epilepsy begins in childhood, and approximately 50–60% of children with epilepsy reach complete remission of seizures at some point in life [4]. Epilepsy may be related to psychiatric, behavioral, and cognitive comorbidities, with consequent long-term negative effects [5]. Children with epilepsy can also have compromised health-related quality of life (HRQoL) [6], with the family environment playing a major role in child's HRQoL [7]. The child's epilepsy can pose a heavy burden for the family, with the main family concerns usually being related to seizure control, school performance, and side effects of medication, and many parents feel that they need more information on their child's epilepsy [8]. Parents' perceptions of their children's HRQoL can be lower than those for other chronic ill- nesses, especially for refractory epilepsy [9]. Successful treatment of epilepsy requires, among others, the correct antiepileptic drug (AED) selection for the specific etiology, the optimal AED dose, and patient's compliance. Interventions for improved self- management can also lead to improvements in HRQoL of children with epilepsy, as well as parent's fears and anxieties [10]. Mothers of young children with epilepsy report high levels of parenting stress and higher levels of difficulties with parent–child interaction, which were not associated with epilepsy factors, compared with that of mothers of children with nonepilepsy-related neurodisability [11]. Par- enting stress is negatively related to quality of life of children with Epilepsy & Behavior 112 (2020) 107454 ⁎ Corresponding author at: Department of Pediatric Neurology, University Children's Hospital, University Medical Centre Ljubljana, Bohoričeva 20, 1525 Ljubljana, Slovenia. E-mail address: damjan.osredkar@kclj.si (D. Osredkar). https://doi.org/10.1016/j.yebeh.2020.107454 1525-5050/© 2020 Elsevier Inc. All rights reserved. Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh