O061 Living with narcolepsy and driving in Australia: Exploring lived experience and clinician perspectives

Abstract Introduction Narcolepsy is a rare neurological sleep disorder. International data suggests a large proportion of persons with narcolepsy experience symptoms that impact their driving (e.g. EDS, cataplexy, microsleeps, fatigue). Driving and narcolepsy has not been explored within the context of the Australian regulatory system. Methods 24 adult persons with narcolepsy (PwN) and 12 clinicians participated in semi-structured interviews exploring the lived experience of narcolepsy in Australia. A sub-study explored responses around driving ability, regulation, and therapeutic relationship; analysed thematically by a multidisciplinary team. Results Preliminary results suggest PwN acknowledge the impact symptoms have on driving, including how feeling tired/fatigued led to increased risky behaviour (e.g. speeding to get home faster and avoid falling asleep at the wheel). Yet most believed narcolepsy did not affect their ability to drive or hold an unrestricted license. This dissonance appears driven by fear of loss of license, associated personal/economic hardship and fear of being vulnerable when asleep on public transport. Most PwNs were unaware of state-based regulatory requirements around diagnosis disclosure and reported their clinicians had not raised this issue. Conversely, not all clinicians appeared aware of regulations and spoke of difficulties broaching the topic, its impact on the patient-physician relationship, and limited resourcing to organise objective measures of driving ability. Discussion Our results suggest increased awareness for all parties is needed around the risks/implications of driving with narcolepsy and regulatory disclosure. Better-quality information, support, and regulatory guidance around fitness to drive would likely help PwN and clinicians navigate this space.