Better evidence for earlier identification and surgical intervention for refractory epilepsy

The BEST study: Stage 1

Project members - Macquarie University

Professor Frances Rapport - Professor

Rebecca Mitchell - Associate Professor

Project contact

Professor Frances Rapport
T: +612 9850 2320
E: frances.rapport@mq.edu.au

Project members - external

• Clinical Associate Professor Armin Nikpour, University of Sydney
  Dr Andrew Bleasel, University of Sydney
  Clinical Associate Professor Geoffrey Herkes, University of Sydney 
• Dr Patti Shih - Honorary Fellow, Faculty of Medicine, Health and Human Sciences, AIHI, Macquarie University

Project main description

This 2017, one-year study examines the burden of epilepsy disease in New South Wales (NSW) and the critical treatment gap that is currently in evidence for refractory epilepsy patients in the State and worldwide. Currently, there is a treatment gap of anything from six months to two years or more for patients with refractory epilepsy, from when a person is initially identified as a suitable surgical candidate to surgery and/or other therapeutic treatment. Refractory epilepsy is a complex type of epilepsy, (also known as focal epilepsy, as it stems predominantly from one part of the brain), which cannot be controlled with the usual antiepileptic drugs.

The gap impacts, not only on the burden of disease for a substantial proportion of the epilepsy population in Australia, but also on people’s ongoing health service use and in-patient costs, pharmaceutical use, patient-professional contact, and work and interpersonal relationships. Data will not only inform how to improve epilepsy services, but also ways to reduce the gap in treatment, while supporting patients as they move through the system, and as they undergo identification, testing and surgical assessment.

Background

Epilepsy is the most common serious brain disorder, affecting more than 50 million people worldwide. In Australia, one in 26 people will develop the disease in their lifetime, equating to 3%-3.5% of the total population, with approximately one third of people unresponsive to drugs, and thus remaining with an uncontrollable disease¹. Epilepsy leaves many at increased risk of depression and anxiety, unable to sustain relationships or employment². Epilepsy also accounts for 26% of the burden of all neurological disorders, with mortality greatest for those with refractory epilepsy.

Aims

Primary Aim

1. To gain a greater understanding of the gap in treatment in NSW and the clinical practices that occur, for refractory epilepsy patients, from the initial patient identification and assessment to surgery.

Secondary Aims

1. Disclose patient- and healthcare professional-reported outcomes (from initial assessment to surgery through clinical observations and patient and healthcare professional interviews, and health related quality of life (HRQoL) assessments (SF12/EQ5D-3L).
2. Provide detailed evidence of treatment processes through a medical record review for a cohort of patients that attend two NSW epilepsy clinics, for pre- and post-surgical assessment, demographic information, surgery or no surgery, and 2-year follow-up.

Design and method

Mixed-methods design, with qualitative observations and interviews, HRQoL assessments, and retrospective, quantitative review of patient medical records.

Data are being collected in two Stages, from Westmead Hospital and Royal Prince Alfred Hospital in this Proof-of-Concept study, with input from Royal North Shore Hospital and Macquarie University Hospital in directing data collection and delivery.  Data for Stage 1 involves 10 patients and 6 healthcare professionals working in epilepsy, intensive observations of clinics and interviews with professionals and patients, alongside patient reported HRQoL indication at the point of care via standardized assessment questionnaires. Data for Stage 2 involves assessment of 50 patients’ medical records across the two hospital clinics, alongside an assessment of patient demographic information, patient characteristics, and patient outcomes following identification as potential surgical candidates for resective surgery, following a refractory epilepsy diagnosis.

Benefits