Epidemiology of Narcolepsy

Hale, Lauren; Guan, Stanford; Emanuele, Erin

doi:10.1007/978-3-319-23739-8_4

Cited by 7 publications

(5 citation statements)

References 47 publications

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“…State-level differences in prescribing are as identified when data was extracted but the CMS databases may be updated by states in the future. As narcolepsy is an uncommon disorder (19-56/100,000 people), additional study with electronic medical records may be necessary to determine what percent of prescriptions were for off-label indications (22).…”

Section: Discussionmentioning

confidence: 99%

Increase but pronounced regional disparities in gamma-hydroxybutyrate (GHB) prescriptions among Medicaid and Medicare patients

Barnhart,

Vujovich,

Piper

2024

Preprint

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BackgroundGamma-hydroxybutyrate (GHB) is a Schedule III drug in the US approved for treatment of cataplexy associated with narcolepsy. Narcolepsy with cateplaxy is a rare disorder with an annual incidence of less than one per one-hundred thousand and GHB is a third-line treatment. The purpose of this study was to describe the temporal pattern of GHB distribution and cost nationally and between states for Medicaid and Medicare patients.MethodsGHB prescriptions were extracted from the State Utilization Data Tool fromMedicaid.govand the Medicare part D Prescribers by Provider and Drug Dataset fromCMS.gov. GHB prescriptions were examined by state when corrected for population. States outside a 95% confidence interval were considered statistically significant. GHB cost analyses were performed between 2017-2021. GHB prescribers were identified for Medicare in 2019.ResultsThere was a steady increase in prescriptions (+88.5%) from 2019 to 2021 and spending (+39.6%) from 2017 to 2020 for Medicaid. Specialists other than somnologists, were found to prescribe the highest number of GHB prescriptions to Medicare Part D enrollees. In 2019, two states (Hawaii and North Dakota) did not prescribe GHB to Medicare patients versus twenty states for Medicaid patients. Maryland’s prescribing to Medicare patients was significantly elevated (269.2/100K).ConclusionGHB prescribing has increased to Medicaid and Medicare patients. Further research is necessary to understand how the COVID-19 pandemic and off-label prescribing (e.g. for excessive daytime sleepiness) may have affected these findings including the origins of the pronounced state level disparities.

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Section: Discussionmentioning

confidence: 99%

Increase but pronounced regional disparities in gamma-hydroxybutyrate (GHB) prescriptions among Medicaid and Medicare patients

Barnhart,

Vujovich,

Piper

2024

Preprint

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“…That is, between the age of diagnosis and the age of onset, there is the patient's recollection, complaints, and subjectivity of excessive somnolence, which, in the absence of cataplexy, may make the diagnosis challenging. As a consequence, diagnosis may occur 10-16 years later [33].…”

Section: Discussionmentioning

confidence: 99%

Narcolepsy Presentation in Diverse Populations: an Update

Spruyt

2020

Curr Sleep Medicine Rep

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Purpose of Review We performed a literature search to generate incidence and prevalence rates of narcolepsy in diverse populations based on current available data. Recent Findings With an onset in childhood, narcolepsy often has a delayed diagnosis due to symptoms of excessive daytime sleepiness not being recognized or being misdiagnosed. Clinical, electrophysiological, and biological tests are needed in order to diagnose narcolepsy. At the same time, the discovery of the link with the immunoregulatory human leukocyte antigen complex and the adverse events in relation to the H1N1 pandemic vaccines have shuffled the epidemiological numbers. Summary In this meta-review, we pooled incidence rates and prevalence rates reported in 30 countries or from 209 sets of data. Findings are reported per age, continent, and proxy race/ethnicity as well as period (i.e., before/after the pandemic). This metareview showed that narcolepsy occurs in 0.87-1.21 of the world population, with specifically NT1 being investigated. Its pooled incidence rate in vaccinated samples is 1.58. There is furthermore an underreporting of narcolepsy in ethnic/race and gender minorities, of childhood narcolepsy type 2 and potential comorbid conditions masking the clinical complaints and hence timely diagnosis.

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“…Even with sophisticated and accurate measures of sleep, it can be difficult to diagnose narcolepsy. Narcolepsy is a neurological disorder that is associated with excessive daytime sleepiness (EDS), abnormalities of rapid eye movement (REM) sleep, muscle weakness with emotion (cataplexy), sleep paralysis, and hypnagogic hallucinations (Hale, 2010 ). All symptoms may not be present in all patients and may vary in intensity and frequency (Peacock & Benca, 2010 ).…”

Section: Improving Predictive Accuracy Of a Survey Measure Of Risk Fomentioning

confidence: 99%

“…Because of difficulty in making a diagnosis of narcolepsy and delay in seeking treatment, the disorder is likely underdiagnosed and undertreated. One estimate suggested that as many as 50% of those with narcolepsy have not been correctly diagnosed (Hale, 2010 ). A survey of adults with narcolepsy in the UK indicated that delay from onset of symptoms to diagnosis ranged from 1 to 61 years, with an average lag of 10.5 years (Morrish, King, Smith, & Shneerson, 2004 ).…”

Section: Improving Predictive Accuracy Of a Survey Measure Of Risk Fomentioning

confidence: 99%

Improving predictive accuracy of a survey measure of risk for narcolepsy

Gaultney

Gray

Daley

2014

Health Psychology and Behavioral Medicine

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Narcolepsy is a brain disorder that may go unrecognized and untreated for many years. The ability to use easily obtained survey information about symptoms of narcolepsy would facilitate identification of individuals potentially at risk for narcolepsy who could be referred for further testing. The purpose of the present study was to explore whether a survey instrument could successfully distinguish narcolepsy from other sleep disorders using data that could easily be obtained from a community or general patient sample. The hypothesized model added the Epworth Sleepiness Scale to a narcolepsy symptoms checklist to explore whether it improved accuracy of classification. Data related to symptoms were extracted from medical records of patients with a known diagnosis of narcolepsy, obstructive sleep apnea, or insomnia. The sample was then randomly split in half, allowing exploratory and confirmatory binary logistic regression. Adding the Epworth Sleepiness Scale score to the original list of symptoms more accurately classified those with or without narcolepsy. Although these findings require additional testing before they can be confirmed and generalized, they suggest that a self-report screening instrument for narcolepsy with acceptable accuracy is possible.

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Epidemiology of Narcolepsy

Cited by 7 publications

References 47 publications

Increase but pronounced regional disparities in gamma-hydroxybutyrate (GHB) prescriptions among Medicaid and Medicare patients

Increase but pronounced regional disparities in gamma-hydroxybutyrate (GHB) prescriptions among Medicaid and Medicare patients

Narcolepsy Presentation in Diverse Populations: an Update

Improving predictive accuracy of a survey measure of risk for narcolepsy

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