2018 worldwide survey of health-care providers caring for patients with narcolepsy: WSS narcolepsy task force.

CSF hypocretin-1 HLA DQB1∗0602 MSLT Narcolepsy type-1 Narcolepsy type-2 Narcolepsy—pharmacotherapy

Journal

Sleep medicine
ISSN: 1878-5506
Titre abrégé: Sleep Med
Pays: Netherlands
ID NLM: 100898759

Informations de publication

Date de publication:
06 2021
Historique:
received: 30 12 2020
revised: 08 03 2021
accepted: 09 03 2021
pubmed: 20 4 2021
medline: 6 7 2021
entrez: 19 4 2021
Statut: ppublish

Résumé

There are limited data available on regional differences in the diagnosis and management of narcolepsy. In order to better understand worldwide trends in clinical assessment and management of narcolepsy, a survey of health-care providers was conducted by the World Sleep Society Narcolepsy task force. A total of 146 surveys that included items on the diagnosis and management of narcolepsy were completed by practitioners representing 37 countries. Most of the participants were from Europe, North America, Oceania, Asia and Latin America. A consistent approach to applying the diagnostic criteria of Narcolepsy was documented with the exception of measurement of CSF hypocretin-1, which has limited availability. While the majority of practitioners (58%) reported not using the test, 1% indicated always evaluating CSF hypocretin-1 levels. There was much variability in the availability of currently recommended medications such as sodium oxybate and pitolisant; modafinil and antidepressants were the most commonly used medications. Amphetamines were unavailable in some countries. The results of the study highlight clinical and therapeutic realities confronted by worldwide physicians in the management of narcolepsy. While the diagnostic criteria of narcolepsy rely in part on the quantification of CSF hypocretin-1, few physicians reported having incorporated this test into their routine assessment of the condition. Regional differences in the management of narcolepsy appeared to be related to geographic availability and expense of the therapeutic agents.

Sections du résumé

BACKGROUND
There are limited data available on regional differences in the diagnosis and management of narcolepsy. In order to better understand worldwide trends in clinical assessment and management of narcolepsy, a survey of health-care providers was conducted by the World Sleep Society Narcolepsy task force.
METHODS
A total of 146 surveys that included items on the diagnosis and management of narcolepsy were completed by practitioners representing 37 countries.
RESULTS
Most of the participants were from Europe, North America, Oceania, Asia and Latin America. A consistent approach to applying the diagnostic criteria of Narcolepsy was documented with the exception of measurement of CSF hypocretin-1, which has limited availability. While the majority of practitioners (58%) reported not using the test, 1% indicated always evaluating CSF hypocretin-1 levels. There was much variability in the availability of currently recommended medications such as sodium oxybate and pitolisant; modafinil and antidepressants were the most commonly used medications. Amphetamines were unavailable in some countries.
CONCLUSION
The results of the study highlight clinical and therapeutic realities confronted by worldwide physicians in the management of narcolepsy. While the diagnostic criteria of narcolepsy rely in part on the quantification of CSF hypocretin-1, few physicians reported having incorporated this test into their routine assessment of the condition. Regional differences in the management of narcolepsy appeared to be related to geographic availability and expense of the therapeutic agents.

Identifiants

pubmed: 33873103
pii: S1389-9457(21)00182-9
doi: 10.1016/j.sleep.2021.03.014
pii:
doi:

Substances chimiques

Orexins 0

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

23-28

Informations de copyright

Copyright © 2021 Elsevier B.V. All rights reserved.

Auteurs

Leon Rosenthal (L)

Sleep Medicine Associates of Texas, Dallas, TX, USA. Electronic address: lrosenthal@sleepmed.com.

Michael J Thorpy (MJ)

Department of Neurology, Albert Einstein College of Medicine, Bronx, New York, NY, USA.

Sona Nevsimalova (S)

Department of Neurology, 1st Faculty of Medicine, Charles University, Prague, Czech Republic.

Geert Mayer (G)

Department of Neurology, Hephata Klinik, Schwalmstadt, Germany; Philipps University, Marburg, Germany.

Fang Han (F)

Department of Pulmonary Medicine, Beijing University People's Hospital, Beijing, China.

Yves Dauvilliers (Y)

National Reference Network for Narcolepsy, Sleep-Wake Disorders Unit, Department of Neurology, Gui-de- Chauliac Hospital, CHU Montpellier, Univ Montpellier, Institute of Neuroscience INM INSERM, Montpellier, France.

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Classifications MeSH