The Burden of Living With Narcolepsy: Patient Perspectives From In-Depth Qualitative Interviews
Introduction: Narcolepsy is a rare, chronic neurological disorder characterized by excessive daytime sleepiness among other symptoms, that can negatively impact patients’ lives. 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], n=12; type 2 [NT2], n=10) participated (average age: NT1=35y; NT2=44y). Most participants identified as female (NT1=83%; NT2=70%) and white (NT1=75%; NT2=60%); approximately half were employed (NT1=58%; NT2=50%). Average time since diagnosis was 7y for NT1 and 11y for NT2.
Narcolepsy negatively impacted participants’ lives in several ways. All or nearly all participants cited impacts on: work and school activities (eg, trouble concentrating on tasks, forgetting information, falling asleep during meetings or conversations; NT1=100%; NT2=100%), mental health (eg, depression, frustration, anxiety, embarrassment, lack of motivation; NT1=100%; NT2=90%), and instrumental activities of daily living (eg, home maintenance, cooking/preparing meals, driving; NT1=92%; NT2=100%). Most participants also described negative impacts on relationships with family, friends, and romantic partners (eg, reduced time spent with children, strain on marriage; NT1=83%; NT2=80%) and activities of daily living (eg, eating, bathing, dressing/grooming, toileting; NT1=92%; NT2=60%).
Conclusion: These results demonstrate the broad impact narcolepsy has on patients’ lives and provides important insights into the patient experience of narcolepsy.
