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May 10, 2026SLEEP

0689 A Conceptual Disease Model of the Symptoms and Impacts of Narcolepsy Type 1 from the Patient Perspective

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Authors

CCCristina CasstevensNFNancy Foldvary-SchaeferKMKiran Maski

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Overview

Qualitative study identifies bothersome symptoms and impacts in narcolepsy type 1, suggesting needed interventions.

Key Points

  • The aim is to identify and understand the most bothersome symptoms and impacts of narcolepsy type 1 from the patient perspective.
  • Qualitative study using concept elicitation interviews with 20 adults diagnosed with narcolepsy type 1.
  • Participants rated symptoms and impacts on a scale from 0 to 10 and identified their top three bothersome issues.
  • Evaluation of symptom and impact frequencies developed a conceptual disease model.
  • Participants reported 30 symptoms and 38 impacts; 12 symptoms and 10 impacts were identified as salient.
  • Chronic daytime sleepiness (100%; mean bothersomeness 7.4) and memory problems (95%; mean 7.8) were among the most bothersome symptoms.
  • Salient impacts included difficulties in social events (90%; mean 7.0), work (75%; mean 8.5), and driving (100%; mean 6.6).

Cite This Study

Casstevens et al. (2026) studied this question.

synapsesocial.com/papers/6a0021fec8f74e3340f9cf87https://doi.org/10.1093/sleep/zsag091.0688
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 10690 A Conceptual Disease Model of the Symptoms and Impacts of Narcolepsy Type 2 from the Patient Perspective2026
  2. 20727 Holistic Symptom Burden Among Individuals with Narcolepsy Type 1 in the United States2026
  3. 30728 Impact of Narcolepsy Type 1 on Quality of Life, Employment, and Socioeconomic Burden: Results from a US Cross-Sectional Survey2026
  4. 4Patient-reported experiences of cognitive difficulties and their impact on daily life in narcolepsy type 12026
  5. 50761 Waking Up to Modern Decision-Making: Integrating Patient Perspectives into Narcolepsy Management2026