ArticleJournal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine2017
Listening to the Patient Voice in Narcolepsy: Diagnostic Delay, Disease Burden, and Treatment Efficacy.
Article in Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 77 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
77 citing papers in PubMed, 2 syntheses or guidelines pooled it, 141 citations in OpenAlex.
- Pooled it
- Treatment of central disorders of hypersomnolence: an American Academy of Sleep Medicine systematic review, meta-analysis, and GRADE assessment.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2021Pooled it
- Long-term safety and maintenance of efficacy of sodium oxybate in the treatment of narcolepsy with cataplexy in pediatric patients.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2022Trial
- Changes in Cataplexy Frequency in a Clinical Trial of Lower-Sodium Oxybate with Taper and Discontinuation of Other Anticataplectic Medications.CNS drugs · 2022Trial
- Trial
- Trial
- A randomized study of solriamfetol for excessive sleepiness in narcolepsy.Annals of neurology · 2019Trial
- Delayed Diagnosis of Narcolepsy: Family History and Clinical Features as Predictive Factors.Psychiatry investigation · 2026Article
- Article
- Defining a Clinically Meaningful Within-Person Change Threshold for the Psychomotor Vigilance Test in Narcolepsy Type 1.Therapeutic innovation & regulatory science · 2026Article
- iSPHYNCS: Unsupervised Clustering in Questionnaires and Metadata Reveals Distinct Subtypes in the Narcolepsy Borderland.Journal of sleep research · 2026Article
- Optimizing patient outcomes and empowering the patient-clinician partnership.Sleep advances : a journal of the Sleep Research Society · 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
- Impaired attention in pediatric narcolepsy type 1.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2026Article
- Age at Onset and Delays in Diagnosis of Central Disorders of Hypersomnolence Over the Past 30 Years.Journal of sleep research · 2026Article
- Social determinants of health, clinical outcomes, and healthcare resource utilization in participants with and without narcolepsy in theSleep advances : a journal of the Sleep Research Society · 2026Article
- 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
- 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
- Circadian Variations in Cognitive Performance Among Patients With Narcolepsy and Obstructive Sleep Apnea: A Comparative Study.Alpha psychiatry · 2025Article
- Narcolepsy: Pathophysiology, Diagnosis, Management, and Future Directions, a Narrative Review.Brain and behavior · 2025Review
17 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
7 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
STUDY
objectivesDescribe common symptoms, comorbidities, functional limitations, and treatment responsiveness among patients with narcolepsy. Investigate the effect of pediatric onset of narcolepsy symptoms on time to diagnosis of narcolepsy and presence of comorbid depression.
methodsCross-sectional survey of 1,699 people in the United States with self-reported diagnosis of narcolepsy. We utilized mixed-methods data analyses to report study findings.
resultsMost participants reported receiving a diagnosis of narcolepsy more than 1 y after symptom onset. We found that the strongest predictor of this delayed diagnosis was pediatric onset of symptoms (odds ratio = 2.4, p < 0.0005). Depression was the most common comorbidity but we detected no association with pediatric onset of narcolepsy symptoms. Overall, participants reported that fatigue and cognitive difficulties were their most burdensome symptoms in addition to sleepiness and cataplexy. The majority of participants reported residual daytime fatigue and/or sleepiness despite treatment. Most participants reported they could not perform at work or school as well as they would like because of narcolepsy symptoms.
conclusionsThis study provides unique insight into the narcolepsy disease experience. The study quantifies the problem of diagnostic delay for narcolepsy patients in the United States and highlights that symptoms are more likely to be missed if they develop before 18 y of age. These results suggest that narcolepsy awareness efforts should be aimed at parents, pediatric health care providers, school professionals, and children/adolescents themselves. Disease burden is high because of problems with fatigue, cognition, and persistence of residual symptoms despite treatment.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.