Promoting faster pathways to surgery: a clinical audit of patients with refractory epilepsy

Virginia Mumford,Jeffrey Braithwaite,Sanjyot Vagholkar,Rebecca Mitchell,Melissa Bartley,Geoffrey Herkes,Andrew Bleasel,Amy Macrae,Armin Nikpour,Patti Shih,Frances Rapport

doi:10.1186/s12883-019-1255-0

Abstract

BackgroundIndividuals with epilepsy who cannot be adequately controlled with anti-epileptic drugs, refractory epilepsy, may be suitable for surgical treatment following detailed assessment. This is a complex process and there are concerns over delays in referring refractory epilepsy patients for surgery and subsequent treatment. The aim of this study was to explore the different patient pathways, referral and surgical timeframes, and surgical and medical treatment options for refractory epilepsy patients referred to two Tertiary Epilepsy Clinics in New South Wales, Australia.MethodsClinical records were reviewed for 50 patients attending the two clinics, in two large teaching hospitals (25 in Clinic 1; 25 in Clinic 2. A purpose-designed audit tool collected detailed aspects of outpatient consultations and treatment. Patients with refractory epilepsy with their first appointment in 2014 were reviewed for up to six visits until the end of 2016. Data collection included: patient demographics, type of epilepsy, drug management, and assessment for surgery. Outcomes included: decisions regarding surgical and/or medical management, and seizure status following surgery. Patient-reported outcome measures to assess anxiety and depression were collected in Clinic 1 only.ResultsPatient mean age was 38.3 years (SD 13.4), the mean years since diagnosis was 17.3 years (SD 9.8), and 88.0% of patients had a main diagnosis of focal epilepsy. Patients were taking an average of 2.3 (SD 0.9) anti-epileptic drugs at the first clinic visit. A total of 17 (34.0%) patients were referred to the surgical team and 11 (22.0%) underwent a neuro-surgical procedure. The average waiting time between visit 1 to surgical referral was 38.8 weeks (SD 25.1), and between visit 1 and the first post-operative visit was 55.8 weeks (SD 25.0).ConclusionThe findings confirm international data showing significant waiting times between diagnosis of epilepsy and referral to specialist clinics for surgical assessment and highlight different approaches in each clinic in terms of visit numbers and recorded activities. A standardised pathway and data collection, including patient-reported outcome measures, would provide better evidence for whether promoting earlier referral and assessment for surgery improves the lives of this disease group.

Highlights

Individuals with epilepsy who cannot be adequately controlled with anti-epileptic drugs, refractory epilepsy, may be suitable for surgical treatment following detailed assessment
It is unique in its application of a newly created clinical audit tool, linked to the Qualtrics Survey Platform, which was designed by the study team to enable extensive insights to be gained into patient pathways, temporal aspects of care provision, Anti-epileptic drugs (AED) use, and treatment decisions around the complex process of assessment and build-up to surgery for refractory epilepsy patients, and will form the basis of future research
The results of this study have helped to contextualize the New South Wales (NSW), state-wide, epidemiological data regarding acute care encounters [11], in addition to adding vital detail to the in-depth qualitative interviews and observations that this team has already undertaken with refractory epilepsy patients undergoing surgery during 2016 [21]

Summary

Introduction

Individuals with epilepsy who cannot be adequately controlled with anti-epileptic drugs, refractory epilepsy, may be suitable for surgical treatment following detailed assessment. The main evidence supporting surgery has come from a randomized controlled trial of 80 patients with temporal lobe epilepsy which indicated that surgery reduced the incidence of seizures versus medical treatment [6]. These findings prompted the development of a practice parameter in the United States to recommend earlier referral for surgical review for patients with temporal lobe seizures [7, 8]. Surgery in refractory epilepsy is not without risk, and while the risk of serious complications is estimated to be below 1% for temporal lobe surgery [13], a paediatric study has reported a serious adverse event rate of 33%, despite a significant increase in freedom from seizures and better quality of life in the surgical versus medication treatment arms [14]

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