O066 The Lived Experience of Narcolepsy - From Symptoms to Stigma

Abstract

Abstract Introduction Narcolepsy is a rare neurological sleep disorder with a substantial adverse impact on health-related quality of life and psychological well-being. Few studies have qualitatively explored how persons with narcolepsy perceive their symptoms and illness experience. Understanding how those with narcolepsy conceptualise and communicate their experience is important if we are to identify/meet their healthcare needs. Method 127 self-reported persons with narcolepsy were recruited from an Australian support group. Saturation was reached after 24, 1hr semi-structured interviews (mean age=33 (SD11), 44% reporting cataplexy). A multidisciplinary team of researchers/clinicians analysed interview transcripts using thematic analysis. Results Several key findings include: 1. participants identified fatigue, sleepiness, and two separate experiences of 'falling asleep/sleep attacks' as distinct symptoms often grouped as excessive daytime sleepiness. 2. Participants attributed their own meaning to commonly used medical terminology that differed from the literature (e.g. describing a sleep attack but calling it cataplexy). 3. ‘well-managed’ narcolepsy was determined by the level of functional impairment rather than symptom frequency. 4. Almost all participants experienced frequent anticipated and internalised- or self-stigma, likely stemming from societal devaluation of sleep and conflation of sleepiness with laziness. Conclusion Our findings suggest a needed shift in narcolepsy management that focuses on functional impairment, rather than just symptom treatment. They also highlight the need for clarification around common narcolepsy terms, as patients/physicians may use the same terminology to try and communicate different concepts. Having identified the type of stigmas experienced, future research is needed to explore if stigma-reduction reduces psychological comorbidity in narcolepsy.