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

BACKGROUND: Individuals 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. METHODS: Clinical 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. RESULTS: Patient 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). CONCLUSION: The 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12883-019-1255-0) contains supplementary material, which is available to authorized users.