Elsevier

Epilepsy Research

Volume 143, July 2018, Pages 20-26
Epilepsy Research

Potential delays in referral and assessment for epilepsy surgery in children with drug-resistant, early-onset epilepsy

https://doi.org/10.1016/j.eplepsyres.2018.04.001Get rights and content

Highlights

  • The longest delays from seizure onset to surgery were in referral to the surgery program and determining surgical candidacy.

  • Potential indications for a surgical evaluation were present within a median of 6 months from diagnosis.

  • Waiting times at centralized children’s hospitals in public health systems may lead to delays in presurgical assessment and surgery.

Abstract

Objective

To study potential delays in epilepsy surgery in children with drug-resistant epilepsy (DRE) of early-onset.

Methods

Medical records were reviewed from 87 children with DRE and seizure onset before age 3 years who underwent epilepsy surgery between 2006 and 2015. Information was obtained about each child’s epilepsy, treatment and specific time points in management. Time intervals along diagnostic, investigative, treatment and referral pathways were calculated.

Results

Median ages at seizure onset, when seen in the epilepsy surgery program and surgery were 5.9 (IQR 10), 19 (IQR 29) and 36 (IQR 67) months; the median delay from seizure onset to surgery was 30 (IQR 67) months. Most children were promptly diagnosed, treated, investigated and seen by a pediatric neurologist. Focal abnormalities were reported on initial EEGs and MRIs in most children, and DRE developed within a median of 6.3 months from commencement of medication. There were median durations of 6.2 months between seeing a neurologist and being seen in the epilepsy surgery program, and then 6.1 months in determining surgical candidacy. Median durations from potential indications for a surgical evaluation to agreed surgical candidacy were 10 (DRE), 12 (focal MRI) and 17 (focal EEG) months. Children received a median of six antiepileptic drugs prior to surgery. Median interval from agreed surgical candidacy to surgery was only 3 months. There were longer durations from seizure onset to surgery in children needing PET (p = 0.001) and in children with seizure-free periods (p < 0.001), and shorter durations in children with a history of infantile spasms (p = 0.01).

Significance

Delays in referral of children for epilepsy surgery are reported. Delays in assessment may be specific to centralized children’s hospitals in public health systems.

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.

Section snippets

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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