Disease symptomatology and response to treatment in people with idiopathic hypersomnia: initial data from the Hypersomnia Foundation registry.
Idiopathic hypersomnia
Long sleep
Narcolepsy
Registry
Sleep drunkenness
Treatment
Journal
Sleep medicine
ISSN: 1878-5506
Titre abrégé: Sleep Med
Pays: Netherlands
ID NLM: 100898759
Informations de publication
Date de publication:
11 2020
11 2020
Historique:
received:
14
06
2020
revised:
27
08
2020
accepted:
31
08
2020
pubmed:
21
9
2020
medline:
22
6
2021
entrez:
20
9
2020
Statut:
ppublish
Résumé
Knowledge of idiopathic hypersomnia symptomatology derives from clinical case series. Web-based registries provide complementary information by allowing larger sample sizes, with greater geographic and social diversity. Data were obtained from the Hypersomnia Foundation's online registry. Common clinical features of idiopathic hypersomnia and other central disorders of hypersomnolence were queried, for the last thirty days and when symptoms were most severe. Symptoms were compared between idiopathic hypersomnia participants with and without long sleep durations and between participants with idiopathic hypersomnia and those with either form of narcolepsy. Frequency of medication use and residual symptoms on medication were evaluated. Five-hundred sixty-three registry respondents were included, with idiopathic hypersomnia (n = 468), narcolepsy type 2 (n = 44), and narcolepsy type 1 (n = 51). "Brain fog," poor memory, and sleep drunkenness were all present in most idiopathic hypersomnia respondents, with brain fog and sleep drunkenness more commonly endorsed by those with long sleep durations. Eighty-two percent of participants with idiopathic hypersomnia were currently treated with medication, most commonly traditional psychostimulants such as amphetamine salts. Among treated patients, symptoms improved while on medication, but substantial residual hypersomnia symptoms remained. Participants with narcolepsy type 1 were more likely than those with idiopathic hypersomnia to endorse intentional and unintentional daytime naps and automatic behaviors. Symptoms of idiopathic hypersomnia extend well beyond excessive daytime sleepiness, and these symptoms frequently persist despite treatment. These findings highlight the importance of online registries in identifying gaps in the use and effectiveness of current treatments.
Sections du résumé
OBJECTIVE/BACKGROUND
Knowledge of idiopathic hypersomnia symptomatology derives from clinical case series. Web-based registries provide complementary information by allowing larger sample sizes, with greater geographic and social diversity.
PATIENTS/METHODS
Data were obtained from the Hypersomnia Foundation's online registry. Common clinical features of idiopathic hypersomnia and other central disorders of hypersomnolence were queried, for the last thirty days and when symptoms were most severe. Symptoms were compared between idiopathic hypersomnia participants with and without long sleep durations and between participants with idiopathic hypersomnia and those with either form of narcolepsy. Frequency of medication use and residual symptoms on medication were evaluated.
RESULTS
Five-hundred sixty-three registry respondents were included, with idiopathic hypersomnia (n = 468), narcolepsy type 2 (n = 44), and narcolepsy type 1 (n = 51). "Brain fog," poor memory, and sleep drunkenness were all present in most idiopathic hypersomnia respondents, with brain fog and sleep drunkenness more commonly endorsed by those with long sleep durations. Eighty-two percent of participants with idiopathic hypersomnia were currently treated with medication, most commonly traditional psychostimulants such as amphetamine salts. Among treated patients, symptoms improved while on medication, but substantial residual hypersomnia symptoms remained. Participants with narcolepsy type 1 were more likely than those with idiopathic hypersomnia to endorse intentional and unintentional daytime naps and automatic behaviors.
CONCLUSIONS
Symptoms of idiopathic hypersomnia extend well beyond excessive daytime sleepiness, and these symptoms frequently persist despite treatment. These findings highlight the importance of online registries in identifying gaps in the use and effectiveness of current treatments.
Identifiants
pubmed: 32950878
pii: S1389-9457(20)30400-7
doi: 10.1016/j.sleep.2020.08.034
pmc: PMC7669698
mid: NIHMS1631940
pii:
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
343-349Subventions
Organisme : NINDS NIH HHS
ID : K23 NS083748
Pays : United States
Organisme : NINDS NIH HHS
ID : R01 NS111280
Pays : United States
Informations de copyright
Copyright © 2020 Elsevier B.V. All rights reserved.
Références
PLoS One. 2014 Jan 14;9(1):e85255
pubmed: 24454829
Brain. 1997 Aug;120 ( Pt 8):1423-35
pubmed: 9278632
Sleep Med. 2016 Aug;24:131-136
pubmed: 27810179
Sleep. 2017 Dec 1;40(12):
pubmed: 29099966
Sleep. 2007 Oct;30(10):1274-81
pubmed: 17969461
J Clin Sleep Med. 2018 Jan 15;14(1):65-74
pubmed: 29198301
J Sleep Res. 2015 Feb;24(1):74-81
pubmed: 25196321
J Sleep Res. 2010 Dec;19(4):525-34
pubmed: 20408941
J Clin Sleep Med. 2013 Aug 15;9(8):789-95
pubmed: 23946709
Front Neurol. 2017 Jul 20;8:350
pubmed: 28775709
Front Neurol. 2018 Jun 07;9:424
pubmed: 29930532
Orphanet J Rare Dis. 2016 Nov 8;11(1):150
pubmed: 27825362
Ann Neurol. 2013 Jun;73(6):785-94
pubmed: 23846792
Sleep Med. 2019 Jan;53:133-140
pubmed: 30508781
Sleep Med. 2019 Mar;55:115-123
pubmed: 30785052
Clin Epidemiol. 2015 Aug 13;7:369-80
pubmed: 26316820
Suppl Clin Neurophysiol. 2000;53:366-70
pubmed: 12741022
Sleep. 2020 Aug 12;43(8):
pubmed: 32193539
PLoS One. 2017 Jun 23;12(6):e0178639
pubmed: 28644838
Sleep. 2019 Oct 21;42(11):
pubmed: 31328786
Sleep Med. 2015 Feb;16(2):225-31
pubmed: 25576137
Sleep. 2009 Jun;32(6):753-9
pubmed: 19544751
J Clin Sleep Med. 2015 Nov 15;11(11):1281-8
pubmed: 26285115
Sleep. 2007 Dec;30(12):1705-11
pubmed: 18246980
Sleep. 2017 Oct 1;40(10):
pubmed: 28958044
Sci Transl Med. 2012 Nov 21;4(161):161ra151
pubmed: 23175709
J Clin Sleep Med. 2009 Dec 15;5(6):562-8
pubmed: 20465024
Sarcoidosis Vasc Diffuse Lung Dis. 2017;34(1):26-34
pubmed: 30613131
Mult Scler. 2020 Mar 12;:1352458520910499
pubmed: 32163003
J Clin Sleep Med. 2014 Sep 15;10(9):1019-24
pubmed: 25142762
J Clin Sleep Med. 2020 May 15;16(5):749-756
pubmed: 32039754
Sleep. 2014 Mar 01;37(3):483-7
pubmed: 24587570