463
Views
2
CrossRef citations to date
0
Altmetric
ORIGINAL RESEARCH

Impairment in Functioning and Quality of Life in Patients with Idiopathic Hypersomnia: The Real World Idiopathic Hypersomnia Outcomes Study (ARISE)

ORCID Icon, , , ORCID Icon, ORCID Icon, & show all
Pages 593-606 | Received 22 Nov 2022, Accepted 13 Jul 2023, Published online: 02 Aug 2023

References

  • American Academy of Sleep Medicine. Idiopathic hypersomnia. In: International Classification of Sleep Disorders. Darien, IL: American Academy of Sleep Medicine; 2014.
  • Billiard M, Sonka K. Idiopathic hypersomnia. Sleep Med Rev. 2016;29:23–33. doi:10.1016/j.smrv.2015.08.007
  • Trotti LM. Idiopathic hypersomnia. Sleep Med Clin. 2017;12(3):331–344. doi:10.1016/j.jsmc.2017.03.009
  • Acquavella J, Mehra R, Bron M, Suomi JMH, Hess GP. Prevalence of narcolepsy, other sleep disorders, and diagnostic tests from 2013–2016: insured patients actively seeking care. J Clin Sleep Med. 2020;16(8):1255–1263. doi:10.5664/jcsm.8482
  • Dauvilliers Y, Bogan RK, Arnulf I, Scammell TE, St Louis EK, Thorpy MJ. Clinical considerations for the diagnosis of idiopathic hypersomnia. Sleep Med Rev. 2022;66:101709. doi:10.1016/j.smrv.2022.101709
  • Trotti LM, Ong JC, Plante DT, Friederich murray C, King R, Bliwise DL. Disease symptomatology and response to treatment in people with idiopathic hypersomnia: initial data from the Hypersomnia Foundation registry. Sleep Med. 2020;75:343–349. doi:10.1016/j.sleep.2020.08.034
  • Nevsimalova S, Susta M, Prihodova I, Maurovich Horvat E, Milata M, Sonka K. Idiopathic hypersomnia: a homogeneous or heterogeneous disease? Sleep Med. 2021;80:86–91. doi:10.1016/j.sleep.2021.01.031
  • Lammers GJ, Bassetti CLA, Dolenc-Groselj L, et al. Diagnosis of central disorders of hypersomnolence: a reappraisal by European experts. Sleep Med Rev. 2020;52:101306. doi:10.1016/j.smrv.2020.101306
  • American Academy of Sleep Medicine. International Classification of Sleep Disorders: Diagnostic & Coding Manual. 2nd ed. Westchester, IL: American Academy of Sleep Medicine; 2005.
  • Wasling HB, Bornstein A, Wasling P. Quality of life and procrastination in post-H1N1 narcolepsy, sporadic narcolepsy and idiopathic hypersomnia, a Swedish cross-sectional study. Sleep Med. 2020;76:104–112. doi:10.1016/j.sleep.2020.10.014
  • Vernet C, Arnulf I. Idiopathic hypersomnia with and without long sleep time: a controlled series of 75 patients. Sleep. 2009;32(6):753–759. doi:10.1093/sleep/32.6.753
  • Ozaki A, Inoue Y, Nakajima T, et al. Health-related quality of life among drug-naive patients with narcolepsy with cataplexy, narcolepsy without cataplexy, and idiopathic hypersomnia without long sleep time. J Clin Sleep Med. 2008;4(6):572–578. doi:10.5664/jcsm.27352
  • Vernet C, Leu-Semenescu S, Buzare MA, Arnulf I. Subjective symptoms in idiopathic hypersomnia: beyond excessive sleepiness. J Sleep Res. 2010;19(4):525–534. doi:10.1111/j.1365-2869.2010.00824.x
  • Pizza F, Jaussent I, Lopez R, et al. Car crashes and central disorders of hypersomnolence: a French study. PLoS One. 2015;10(6):e0129386. doi:10.1371/journal.pone.0129386
  • Schneider LD, Stevens J, Husain AM, et al. Symptom severity and treatment satisfaction in patients with idiopathic hypersomnia: the real world idiopathic hypersomnia outcomes study (ARISE). Nat Sci Sleep. 2023;15:89–101. doi:10.2147/NSS.S386021
  • Chasens ER, Ratcliffe SJ, Weaver TE. Development of the FOSQ-10: a short version of the functional outcomes of sleep questionnaire. Sleep. 2009;32(7):915–919. doi:10.1093/sleep/32.7.915
  • National Institute of Neurological Disorders and Stroke. User Manual for the Quality of Life in Neurological Disorders (Neuro-Qol) Measures, Version 2.0. Bethesda, MD: National Institute of Neurological Disorders and Stroke; 2015.
  • Cella D, Lai JS, Nowinski CJ, et al. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology. 2012;78(23):1860–1867. doi:10.1212/WNL.0b013e318258f744
  • Iverson GL, Lam RW. Rapid screening for perceived cognitive impairment in major depressive disorder. Ann Clin Psychiatry. 2013;25(2):135–140.
  • Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–613. doi:10.1046/j.1525-1497.2001.016009606.x
  • Reilly MC, Zbrozek AS, Dukes EM. The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics. 1993;4(5):353–365. doi:10.2165/00019053-199304050-00006
  • Dauvilliers Y, Arnulf I, Foldvary-Schaefer N, et al. Safety and efficacy of lower-sodium oxybate in adults with idiopathic hypersomnia: a phase 3, placebo-controlled, double-blind, randomised withdrawal study. Lancet Neurol. 2022;21(1):53–65. doi:10.1016/S1474-4422(21)00368-9
  • Thorpy MJ, Arnulf I, Foldvary-Schaefer N, et al. Efficacy and safety of lower-sodium oxybate in an open-label titration period of a phase 3 clinical study in adults with idiopathic hypersomnia. Nat Sci Sleep. 2022;14:1901–1917. doi:10.2147/NSS.S369122
  • Vignatelli L, D’Alessandro R, Mosconi P, et al. Health-related quality of life in Italian patients with narcolepsy: the SF-36 health survey. Sleep Med. 2004;5(5):467–475. doi:10.1016/j.sleep.2004.04.003
  • Dauvilliers Y, Paquereau J, Bastuji H, Drouot X, Weil JS, Viot-Blanc V. Psychological health in central hypersomnias: the French Harmony study. J Neurol Neurosurg Psychiatry. 2009;80(6):636–641. doi:10.1136/jnnp.2008.161588
  • Kowalczyk S, DeBassio WA. Health-related quality of life in narcolepsy and idiopathic hypersomnia. Sleep. 2017;40(suppl 1):A241–A242. doi:10.1093/sleepj/zsx050.651
  • Bušková J, Novák T, Miletínová E, et al. Self-reported symptoms and objective measures in idiopathic hypersomnia and hypersomnia associated with psychiatric disorders: a prospective cross-sectional study. J Clin Sleep Med. 2022;18(3):713–720. doi:10.5664/jcsm.9702
  • Ramm M, Boentert M, Lojewsky N, Jafarpour A, Young P, Heidbreder A. Disease-specific attention impairment in disorders of chronic excessive daytime sleepiness. Sleep Med. 2019;53:133–140. doi:10.1016/j.sleep.2018.09.021
  • Pascoe M, Bena J, Foldvary-Schaefer N. Effects of pharmacotherapy treatment on patient-reported outcomes in a narcolepsy and idiopathic hypersomnia cohort. J Clin Sleep Med. 2019;15(12):1799–1806. doi:10.5664/jcsm.8088
  • Saad R, Prince P, Taylor B, Ben-Joseph RH. Characteristics of adults newly diagnosed with idiopathic hypersomnia in the United States. Sleep Epidemiol. Accepted manuscript. Published online July 18, 2023. doi:10.1016/j.sleepe.2023.100059
  • Emsellem HA, Thorpy MJ, Lammers GJ, et al. Measures of functional outcomes, work productivity, and quality of life from a randomized, phase 3 study of solriamfetol in participants with narcolepsy. Sleep Med. 2020;67:128–136. doi:10.1016/j.sleep.2019.11.1250
  • US Bureau of Labor Statistics. Household data annual averages. 47. Absences from work of employed full-time wage and salary workers by occupation and industry; 2022. Available from: https://www.bls.gov/cps/aa2021/cpsaat47.pdf. Accessed July 20, 2023.
  • Jazz Pharmaceuticals, Inc. Xywav® (Calcium, Magnesium, Potassium, and Sodium Oxybates) Oral Solution, CIII. Palo Alto, CA: Jazz Pharmaceuticals, Inc.; 2022.
  • Szarfman A, Kuchenberg T, Soreth J, Lajmanovich S. Declaring the sodium content of drug products. N Engl J Med. 1995;333(19):1291. doi:10.1056/NEJM199511093331917
  • US Food and Drug Administration. Clinical Review for Binosto, NDA 202344. US Food and Drug Administration; 2012.
  • US Food and Drug Administration. Quantitative labeling of sodium, potassium, and phosphorus for human over-the-counter and prescription drug products. Guidance for Industry; 2022. Available from: https://www.fda.gov/regulatory-information/search-fda-guidance-documents/quantitative-labeling-sodium-potassium-and-phosphorus-human-over-counter-and-prescription-drug. Accessed July 20, 2023.
  • Neikrug AB, Crawford MR, Ong JC. Behavioral sleep medicine services for hypersomnia disorders: a survey study. Behav Sleep Med. 2017;15(2):158–171. doi:10.1080/15402002.2015.1120201
  • Smith WG. Does gender influence online survey participation? A record-linkage analysis of university faculty online survey response behavior; 2008. Available from: https://files.eric.ed.gov/fulltext/ED501717.pdf. Accessed July 20, 2023.