Patient-reported experiences of cognitive difficulties and their impact on daily life in narcolepsy type 1

The cognitive difficulties experienced by individuals with narcolepsy type 1 (NT1), a rare and chronic neurological disorder, are understudied, with limited knowledge of their consequences in daily life. Here, we investigated the nature of cognitive difficulties and their consequences for daily life from the perspective of adults with NT1.

In-depth, qualitative interviews were conducted with adults diagnosed with NT1 residing in the United States. Participants were recruited through (1) a patient advocacy organization (via social media and website); (2) a professional market research firm; and (3) participant referrals. Individual interviews were conducted by telephone, following a semi-structured guide, and lasted approximately 90 min. Qualitative analysis used an adapted grounded theory approach to identify key conceptual themes related to cognitive difficulties and their impacts on daily life.

Of 46 participants, most reported experiencing some cognitive difficulties, with the most common being trouble remembering and difficulty with focus or sustained attention. Most participants characterized their difficulties with cognition as moderate or severe and reported these occurring daily. The qualitative findings informed the development of a conceptual model depicting cognitive difficulties and their broad impact on functioning and well-being in adults with NT1.

Cognitive difficulties in adults with NT1 are frequent, severe, and described as interfering with daily life activities and well-being. These data highlight a clear need to assess cognitive function in people with NT1 and identify treatments that address NT1-associated cognitive symptoms.