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ORIGINAL RESEARCH article

Front. Neurol.

Sec. Sleep Disorders

This article is part of the Research TopicExploring Cognitive Deficits Across Various Sleep DisordersView all articles

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

Provisionally accepted
Kiran MaskiKiran Maski1Kathryn M. PfeifferKathryn M. Pfeiffer2Meryl BrodMeryl Brod2Robert D. LatzmanRobert D. Latzman3Sarah L. BerminghamSarah L. Bermingham4Paul MaruffPaul Maruff5Brian T. HarelBrian T. Harel3*
  • 1Boston Children's Hospital, Boston, United States
  • 2The Brod Group, Mill Valley, California, United States
  • 3Takeda Development Center Americas, Inc., Cambridge, MA, United States
  • 4Takeda Pharmaceuticals USA., Inc, Cambridge, Massachusetts, United States
  • 5Cogstate Ltd, Melbourne, Australia

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Background: 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. Methods: 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 minutes. Qualitative analysis used an adapted grounded theory approach to identify key conceptual themes related to cognitive difficulties and their impacts on daily life. Results: 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. Conclusion: 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.

Keywords: cognitive difficulties, cognitive symptoms, interviews, Narcolepsy, NT1, Qualitative

Received: 04 Dec 2025; Accepted: 09 Feb 2026.

Copyright: © 2026 Maski, Pfeiffer, Brod, Latzman, Bermingham, Maruff and Harel. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Brian T. Harel

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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