Identification and referral pathways for people living with refractory epilepsy from primary care to Tertiary Epilepsy Centres in New South Wales

Background
Approximately one third of people living with epilepsy are diagnosed with refractory epilepsy, a complex condition ineffectively managed by anti-epileptic drugs. Surgical intervention can be life-changing, but delays of up to 17 years exist in Australia for suitable candidates.
Aim/Objectives
This mixed method study, conducted in New South Wales, aimed to explore clinical practices and experiences around identification of refractory epilepsy patients and referral pathways through primary and community care to Tertiary Epilepsy Centres (TEC).
Methods
A total of 52 data collection activities (semi-structured interviews, clinical observations and in-depth surveys) took place with neurologists, general practitioners (GP), and adults living with refractory epilepsy. A thematic analysis was conducted on the qualitative data, embellished by GP survey data.
Findings
The first theme: ‘Patient healthcare pathways and care experiences’ highlights that the GP is pivotal in managing refractory epilepsy but relies on the general neurologist or epilepsy specialist for diagnosis, and ongoing monitoring of treatment regimes. The second theme: ‘Factors influencing referral practices and patient healthcare pathways’ indicates that referrals to a TEC are affected by knowledge of treatment options, non-standardised referral practices, lengthy appointment waiting
times, and communication avenues amongst clinicians and between patients, family members and clinicians.
Implications
The effective management of refractory epilepsy is affected by the lack of clinical knowledge and standardisation of treatment approaches. Establishing better shared care pathways, and more person-focused practices, with patients involved in decision-making, across primary, community and tertiary contexts, may engender more effective treatment and reduce current delays to surgical intervention.