The Burden of Narcolepsy in Adults: A Population Sampling Study Using Personal Media

References

• Almeneessier, A. S., Alballa, N. S., Alsalman, B. H., Aleissi, S., Olaish, A. H., & BaHammam, A. S. (2019). A 10-year longitudinal observational study of cataplexy in a cohort of narcolepsy type 1 patients. Nature and Science of Sleep, 11, 231–239. https://doi.org/10.2147/NSS.S229105
   PubMed Web of Science ®Google Scholar
• Barateau, L., Lopez, R., Chenini, S., Pesenti, C., Rassu, A. L., Jaussent, I., & Dauvilliers, Y. (2020). Depression and suicidal thoughts in untreated and treated narcolepsy: Systematic analysis. Neurology, 95(20), e2755–2768. https://doi.org/10.1212/WNL.0000000000010737
   PubMed Web of Science ®Google Scholar
• Bassetti, C. L. A., Kallweit, U., Vignatelli, L., Plazzi, G., Lecendreux, M., Baldin, E., Dolenc-Groselj, L., Jennum, P., Khatami, R., Manconi, M., Mayor, G., Partinen, M., Pollmächer, T., Reading, P., Santamaria, J., Sonka, K., Dauvilliers, Y., & Lammers, G. J. (2021). European guideline and expert statements on the management of narcolepsy in adults and children. European Journal of Neurology, 28(9), 2815–2830. https://doi.org/10.1111/ene.14888
   PubMed Web of Science ®Google Scholar
• Büchele, F., Baumann, C. R., Poryazova, R., Werth, E., & Valko, P. O. (2018). Remitting narcolepsy? Longitudinal observations in a hypocretin-deficient cohort. Sleep, 41(9). https://doi.org/10.1093/sleep/zsy118
   PubMed Web of Science ®Google Scholar
• Bureau, U. S. C. (2021). Current population survey’s annual social and economic supplement.
   Google Scholar
• Carroll, J. K., Moorhead, A., Bond, R., LeBlanc, W. G., Petrella, R. J., & Fiscella, K. (2017). Who uses mobile phone health apps and does use matter? A secondary data analytics approach. Journal of Medical Internet Research, 19(4), e125. https://doi.org/10.2196/jmir.5604
   PubMedGoogle Scholar
• Chen, T. -Y., Huang, C. -H., Chung, C. -H., Mao, W. -C., Yeh, C. -B., Yang, C. C. H., Kuo, T. B. J., Yang, S. -S., Chien, W. -C., & Tzeng, N. -S. (2020). Sex and age differences in the association between anxiety disorders and narcolepsy: A nationwide population-based case control study. Journal of Affective Disorders, 264, 130–137. https://doi.org/10.1016/j.jad.2019.12.010
   PubMed Web of Science ®Google Scholar
• Dauvilliers, Y., Barateau, L., Middleton, B., van der Veen, D. R., & Skene, D. J. (2022). Metabolomics signature of patients with narcolepsy. Neurology, 98(5), e493–505. https://doi.org/10.1212/WNL.0000000000013128
   PubMed Web of Science ®Google Scholar
• Dauvilliers, Y., Beziat, S., Pesenti, C., Lopez, R., Barateau, L., Carlander, B., Luca, G., Tafti, M., Morin, C. M., Billiard, M., & Jaussent, I. (2017). Measurement of narcolepsy symptoms: The narcolepsy severity scale. Neurology, 88(14), 1358–1365. https://doi.org/10.1212/WNL.0000000000003787
   PubMed Web of Science ®Google Scholar
• Droogleever Fortuyn, H. A., Fronczek, R., Smitshoek, M., Overeem, S., Lappenschaar, M., Kalkman, J., Renier, W., Buitelaar, J., Lammers, G. J., & Bleijenberg, G. (2012). Severe fatigue in narcolepsy with cataplexy. Journal of Sleep Research, 21(2), 163–169. Epub 2011 Aug 16. https://doi.org/10.1111/j.1365-2869.2011.00943.x
   PubMed Web of Science ®Google Scholar
• Fu, H. N., Adam, T. J., Konstan, J. A., Wolfson, J. A., Clancy, T. R., & Wyman, J. F. (2019). InfluencE of patient characteristics and psychological needs on diabetes mobile app usability in adults with type 1 or type 2 diabetes: Crossover randomized trial. JMIR Diabetes, 4(2), e11462. https://doi.org/10.2196/11462
   PubMedGoogle Scholar
• Huberty, J., Vranceanu, A. M., Carney, C., Breus, M., Gordon, M., & Puzia, M. E. (2019). Characteristics and usage patterns among 12,151 paid subscribers of the calm meditation app: Cross-sectional survey. JMIR mHealth Uhealth, 7(11), e15648. https://doi.org/10.2196/15648
   PubMed Web of Science ®Google Scholar
• Hublin, C., Kaprio, J., Partinen, M., Koskenvuo, M., & Heikkilä, K. (1994). The Ullanlinna narcolepsy scale: Validation of a measure of symptoms in the narcoleptic syndrome. Journal of Sleep Research, 3(1), 52–59. https://doi.org/10.1111/j.1365-2869.1994.tb00104.x
   PubMed Web of Science ®Google Scholar
• Kallweit, U., Schmidt, M., & Bassetti, C. L. (2017). Patient-reported measures of narcolepsy: The need for better assessment. Journal of Clinical Sleep Medicine, 13(5), 737–744. https://doi.org/10.5664/jcsm.6596
   PubMed Web of Science ®Google Scholar
• Kim, Y., Briley, D. A., & Ocepek, M. G. (2015). Differential innovation of smartphone and application use by sociodemographics and personality. Computers in Human Behavior, 44, 141–147. https://doi.org/10.1016/j.chb.2014.11.059
   Web of Science ®Google Scholar
• Kornum, B. R., Knudsen, S., Ollila, H. M., Pizza, F., Jennum, P. J., Dauvilliers, Y., & Overeem, S. (2017). Narcolepsy. Nature Reviews Disease Primers, 3(1), 16100. https://doi.org/10.1038/nrdp.2016.100
   PubMed Web of Science ®Google Scholar
• Lammers, G. J. (2018). Drugs used in narcolepsy and other Hypersomnias. Sleep Medicine Clinics, 13(2), 183–189. https://doi.org/10.1016/j.jsmc.2018.02.009
   PubMed Web of Science ®Google Scholar
• Maski, K., Steinhart, E., Williams, D., Scammell, T., Flygare, J., McCleary, K., & Gow, M. (2017). Listening to tHe patient voice in narcolepsy: Diagnostic delay, disease burden, and treatment efficacy. Journal of Clinical Sleep Medicine, 13(3), 419–425. https://doi.org/10.5664/jcsm.6494
   PubMed Web of Science ®Google Scholar
• Morgenthaler, T. I., Kapur, V. K., Brown, T., Swick, T. J., Alessi, C., Aurora, R. N., Boehlecke, B., Chesson, A. L., Friedman, L., Maganti, R., Owens, J., Pancer, J., & Zak, R. (2007). Practice parameters for the treatment of narcolepsy and other hypersomnias of central origin. Sleep, 30(12), 1705–1711. https://doi.org/10.1093/sleep/30.12.1705
   PubMed Web of Science ®Google Scholar
• Morse, A. M., & Sanjeev, K. (2018). Narcolepsy and psychiatric disorders: Comorbidities or shared Pathophysiology? Medical Sciences, 6(1), 16. https://doi.org/10.3390/medsci6010016
   Google Scholar
• Parmar, A., Yeh, E. A., Korczak, D. J., Weiss, S. K., Lu, Z., Zweerink, A., Toulany, A., Murray, B. J., & Narang, I. (2019). Depressive symptoms, sleep patterns, and physical activity in adolescents with narcolepsy. Sleep, 42(8). https://doi.org/10.1093/sleep/zsz111
   PubMed Web of Science ®Google Scholar
• Quaedackers, L., De Wit, J., Pillen, S., Van Gilst, M., Batalas, N., Lammers, G. J., Markopoulos, P., & Overeem, S. (2020). A mobile app for longterm monitoring of narcolepsy symptoms: Design, development, and evaluation. JMIR mHealth and uHealth, 8(1), e14939. https://doi.org/10.2196/14939
   PubMed Web of Science ®Google Scholar
• Raggi, A., Plazzi, G., & Ferri, R. (2019). Health-related quality of life in patients with narcolepsy: A review of the literature. Journal of Nervous & Mental Disease, 207(2), 84–99. https://doi.org/10.1097/NMD.0000000000000918
   PubMed Web of Science ®Google Scholar
• Ruoff, C. M., Reaven, N. L., Funk, S. E., McGaughey, K. J., Ohayon, M. M., Guilleminault, C., & Black, J. (2017). High rates of psychiatric comorbidity in narcolepsy: Findings from the Burden of Narcolepsy Disease (BOND) study of 9,312 patients in the United States. The Journal of Clinical Psychiatry, 78(2), 171–176. https://doi.org/10.4088/JCP.15m10262
   PubMed Web of Science ®Google Scholar
• Sarkanen, T., Alakuijala, A., & Partinen, M. (2019). Ullanlinna narcolepsy scale in diagnosis of narcolepsy. Sleep, 42(3). https://doi.org/10.1093/sleep/zsy238
   PubMed Web of Science ®Google Scholar
• Tadrous, R., O’Rourke, D., Mockler, D., & Broderick, J. (2021). Health-related quality of life in narcolepsy: A systematic review and meta-analysis. Journal of Sleep Research, 30(6), e13383. https://doi.org/10.1111/jsr.13383
   PubMed Web of Science ®Google Scholar
• Thorpy, M. J. (2020). RecentLy approved and upcoming treatments for narcolepsy. CNS Drugs, 34(1), 9–27. https://doi.org/10.1007/s40263-019-00689-1
   PubMed Web of Science ®Google Scholar
• Yeh, J. -Y., Shyu, Y. -C., Lee, S. -Y., Yuan, S. -S., Yang, C. -J., Yang, K. -C., Lee, T. -L., Sun, C. -C., & Wang, L. J. (2020). Comorbidity of narcolepsy and psychotic disorders: A nationwide population-based study in Taiwan. Frontiers in Psychiatry, 11, 205. https://doi.org/10.3389/fpsyt.2020.00205
   PubMed Web of Science ®Google Scholar
• Zamarian, L., Hogl, B., Delazer, M., Hingerl, K., Gabelia, D., Mitterling, T., Brandauer, E., & Frauscher, B. (2015). Subjective deficits of attention, cognition and depression in patients with narcolepsy. Sleep Medicine, 16(1), 45–51. https://doi.org/10.1016/j.sleep.2014.07.025
   PubMed Web of Science ®Google Scholar