Potential delays in referral and assessment for epilepsy surgery in children with drug-resistant, early-onset epilepsy
Introduction
The incidence of epilepsy during childhood is highest during the first year of life (Camfield and Camfield, 2015). Despite best medical management, early onset epilepsy is often drug-resistant (Wirrell et al., 2012). Children with drug-resistant epilepsy (DRE) (Kwan et al., 2010) of early onset may benefit from epilepsy surgery in early life (Cross et al., 2006; Duchowny et al., 1998; Harvey et al., 2008; Sugimoto et al., 1999), with control of seizures, minimization of neurodevelopmental delays and psychosocial stress, and improved quality of life (Fiest et al., 2014; Freitag and Tuxhorn, 2005; Jonas et al., 2004; Loddenkemper et al., 2007). Current research and expert opinion advocate for early surgery to prevent or minimize the development of cognitive and behavioral impairments (Cross, 2010; Harvey et al., 2008; Hemb et al., 2010b; Lamberink et al., 2015). However, studies typically indicate delays of about 5 years between epilepsy onset and surgery in children (Benifla et al., 2008; Harvey et al., 2008; Hemb et al., 2010a; Lamberink et al., 2015). Such delays are likely to have greater developmental impact on children with onset of epilepsy during infancy and early childhood; this is also the period when seizures typically commence in children with surgically-remediable epilepsies (Harvey et al., 2008).
The reasons for delays in epilepsy surgery are only partly understood. Potential factors that hinder timely referral for epilepsy surgery include delayed diagnosis of seizures and DRE, failure of clinicians to refer and accurately inform parents about surgical options, the heterogeneous nature of epilepsy in children, and concern that epilepsy might be self-limited (Berg et al., 2014; Berg et al., 2006; Erba et al., 2012; Lim et al., 2013). Geographic, cultural, health system and local institutional factors may also impact on the timeliness of referral, assessment and surgery (Hauptman et al., 2013; Lim et al., 2013), these potentially differing between countries.
This study aimed to identify potential clinical factors and healthcare system obstructions to epilepsy surgery in infants and young children by analyzing time intervals between the onset, diagnosis, drug treatment, pre-surgical evaluation and surgery for children with DRE of early-onset. We anticipated that the longest time interval to epilepsy surgery would be in referral to the epilepsy surgery program, and that shorter time intervals would be present in children with frequent or severe seizures.
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Materials and methods
Children were included in this study if they had (1) resective or disconnective epilepsy surgery (excluding corpus callosotomy) at the Royal Children’s Hospital (RCH), Melbourne between 2006 and 2015, (2) seizure onset before age 3 years, and (3) seizure onset and initial management in the state of Victoria, Australia.
The RCH is one of two tertiary pediatric hospitals in Melbourne Victoria, at which all but two of the 17 Victorian pediatric neurologists have appointments. The RCH is the only
Results
One hundred one children met inclusion criteria for year of surgery and age at seizure onset. Review of medical records led to exclusion of 14 children; 10 children had seizure onset and early management overseas or interstate; an enlarging cavernous angioma rather than seizures was the indication for surgery in one child; one child underwent a corpus callosotomy; in one child, the parents withdrew the child from medical care and discontinued all AEDs; and one child had an incomplete medical
Discussion
We studied the time intervals from seizure onset to epilepsy surgery at our center in children with DRE of early-onset. Hospital medical records and databases provided a robust and often contemporaneous source of accurate dates of seizure onset, diagnosis, investigations and treatment. Confining the study to in-state children minimized missing data and referral bias. As there is only one pediatric epilepsy surgery center in Victoria, this also ensured that all children in the study population
Funding
This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors.
Conflicts of interest
None of the authors has any conflict of interest to disclose.
Declarations of interest
None.
Acknowledgement
None.
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