0673 The Burden of Living with Narcolepsy : Patient Perspectives from In-Depth Qualitative Interviews

Abstract Introduction Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness, among other symptoms. This rare condition may be associated with negative impacts to patients’ lives, including impaired mental and physical health, increased stigma, and difficulty obtaining an education or maintaining employment. Previous studies that have identified the burden associated with narcolepsy have largely relied on quantitative methods (e.g., surveys), providing limited insights into the patient experience. This study used qualitative, in-depth interviews to characterize the burden of narcolepsy. Methods Participant recruitment included convenience and snowball sampling. Sixty-minute individual interviews were conducted online by trained qualitative researchers. Interviewers used a concept elicitation approach with a semi-structured interview guide to elicit descriptions of patients’ experiences. Interview transcripts were coded and thematically analyzed using inductive and deductive approaches. Results Twenty-two adults with narcolepsy (type 1 NT1 =12; type 2 NT2=10) participated in this study (average age: NT1=35; NT2=44). Most identified as female (NT1=83%; NT2=70%) and white (NT1=75%; NT2=60%). Approximately half of participants were employed (NT1=58%; NT2=50%). Average time since diagnosis was 7 years for NT1 and 11 years for NT2. Participants described several ways that narcolepsy has negatively impacted their lives. All or nearly all participants cited impacts on: work and school activities (e.g., trouble concentrating on tasks, forgetting information, falling asleep during meetings or conversations; NT1=100%; NT2=100%), mental health (e.g., depression, frustration, anxiety, embarrassment, lack of motivation; NT1=100%; NT2=90%), and instrumental activities of daily living (e.g., home maintenance, cooking/preparing meals, driving; NT1=92%; NT2=100%). Most participants also described negative impacts on their relationships with family, friends, and romantic partners (e.g., reduced time spent with children, strain on marriage; NT1=83%; NT2=80%) and activities of daily living (e.g., eating, bathing, dressing/grooming, toileting; NT1=92%; NT2=60%). Conclusion Results from this study demonstrate the wide breadth of impacts narcolepsy has on patients’ lives and, in so doing, helps to fill a gap in the literature by providing rich insights into the patient experience of narcolepsy. Support (if any) This study was sponsored by Alkermes, Inc. and conducted in partnership with QualityMetric. The authors thank Megan Patsch for her contributions.