ArticleCNS drugs2025
A Survey of People Living with Narcolepsy in the USA: Path to Diagnosis, Quality of Life, and Treatment Landscape from the Patient's Perspective.
Article in CNS drugs, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- Defining a Clinically Meaningful Within-Person Change Threshold for the Psychomotor Vigilance Test in Narcolepsy Type 1.Therapeutic innovation & regulatory science · 2026Article
- Therapeutic potential of targeting the orexin (hypocretin) system in sleep disorders.Nature reviews. Endocrinology · 2026Review
- Practical Guidance for Initiation and Management of Patients on Once-Nightly Sodium Oxybate for Narcolepsy Treatment: Modified Delphi Panel Consensus Recommendations.Neurology and therapy · 2026Article
- Sensor-Based Assessment of Morning Prospective Memory in Narcolepsy Type 1: Evidence from Children and Adult Cohorts.Sensors (Basel, Switzerland) · 2026Article
- EvoApneaFormer: an IoT and prognostic evolutionary deep learning-based framework for real-time multi-event sleep apnea disorder detection and remote monitoring.Frontiers in bioengineering and biotechnology · 2026Article
- Narcolepsy as an immune-associated hypothalamic encephalopathy: orexin dysfunction and implications for precision sleep medicine.Frontiers in psychiatry · 2026Review
- The impact of narcolepsy and idiopathic hypersomnia on work-related outcomes: a systematic literature review.Sleep advances : a journal of the Sleep Research Society · 2026Review
- Patient-reported outcome measures in central disorders of hypersomnolence: consensus of a sleep consortium/RARE-X expert working group.Sleep advances : a journal of the Sleep Research Society · 2026Article
- Narcolepsy: Pathophysiology, Diagnosis, Management, and Future Directions, a Narrative Review.Brain and behavior · 2025Review
- A Comprehensive Review of Current and Emerging Treatments for Narcolepsy Type 1.Journal of clinical medicine · 2025Review
- A New Dawn in the Management of Narcolepsy.CNS drugs · 2025Article
- Review
- Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.Nature and science of sleep · 2025Article
- Patient-reported experiences of cognitive difficulties and their impact on daily life in narcolepsy type 1.Frontiers in neurologyArticle
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundNarcolepsy is a chronic, burdensome neurologic disorder that significantly impacts the daily life of people with narcolepsy (PWN). Real-world perspectives from PWN can help address their unique experiences and treatment needs. PWN were surveyed to examine the path to a narcolepsy diagnosis, the breadth of symptom burden experienced by PWN, and current trends in treatment.
methodsA 15-min online survey was sent by email to 3959 US members of MyNarcolepsyTeam (February 2022). The survey was divided into three sections (screening [patient characteristics], diagnosis/symptoms, and patient quality of life) for a total of 27 questions.
resultsIn total, 110 members completed the survey. Of these, most were female (84%) and nearly half (48%) were diagnosed with narcolepsy type 1 (with cataplexy). Approximately one-third (31%) of members reported receiving a definitive diagnosis ≥ 10 years after first speaking with a clinician; most were previously diagnosed with depression (73%). Excessive daytime sleepiness (EDS, 93%) and fatigue (84%) were the most frequently reported symptoms that prompted respondents to seek a diagnosis or feel that something was wrong. Additionally, EDS was reported as the most troubling symptom (92%). Respondents' most desired treatment outcome was to stop sleeping during the day (77%). Most (76%) indicated an extremely or very severe impact on daily life. One in eight respondents were not taking any medication for their narcolepsy. Of those taking medication, 58% received polypharmacy to address narcolepsy symptoms.
conclusionsThese survey findings further characterize the diagnostic delay, symptom burden, and treatment needs of PWN. Understanding the breadth of impact of narcolepsy from the patients' perspective could improve shared decision-making between PWN and their treating clinicians.
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