Abstract
Background
Narcolepsy (NA) is a sleep disorder characterized by excessive daytime sleepiness and an increased propensity of rapid eye movement sleep. If left untreated, NA can lead to academic underachievement or job loss because of dozing off or mistakes caused by inattentiveness due to sleepiness.
Purpose
Although untreated narcolepsy patients may suffer from many social disadvantages due to excessive daytime sleepiness, mostly it takes a long time to receive a definitive diagnosis of the disorder. This retrospective study investigated factors related to the period until definitive diagnosis among patients with narcolepsy in Japan.
Methods
We enrolled 181 consecutive patients (108 men, 73 women; mean age 37.6 ± 16.6 years old; narcolepsy with cataplexy/narcolepsy without cataplexy = 131:50). Multivariate logistic regression analysis was performed with period until definitive diagnosis as the dependent variable and descriptive clinical variables as the independent variables.
Results
The mean period until receiving the diagnosis among the participants was 9.9 ± 10.1 years. More than half of the patients first learned about the disorder from information provided by the media. Multivariate logistic analysis indicated that adult onset (p < 0.01), onset in 1995 or later (p < 0.001), and first learning about the disorder from a sleep disorder specialist physician or a general practitioner (p < 0.001) were associated with a time taken for receiving a definitive diagnosis less than or equal to the median value (7 years).
Conclusion
Improving access to information about the concept of the disorder and the medical institutions specialized in sleep disorders, especially via the Internet, would be necessary to promote early diagnosis of the disorder.
Similar content being viewed by others
References
Daniels LE. Narcolepsy Med. 1934;13:1–122.
Yoss RE, Daly DD. Criteria for the diagnosis of the narcoleptic syndrome. Proc Ayo Clin. 1957;32:320–8.
Aldrich MS. The neurobiology of narcolepsy. Trends Neurosci. 1991;14:235–9.
Parkes D. Introduction to the mechanism of action of different treatments of narcolepsy. Sleep. 1994;17:S93–6.
Alaia SL. Life effects of narcolepsy: measures of negative impact, social support and psychological well-being. Loss Grief Care. 1992;5:1–22.
Broughton R, Ghanem Q, Hishikawa Y, Sugita Y, Nevsimalova S, Roth B. Life effects of narcolepsy in 180 patients from North America, Asia and Europe compared to matched controls. Can J Neurol Sci. 1981;8:299–304.
Daniels E, King M, Smith I, Shneerson J. Health-related quality of life in narcolepsy. J Sleep Res. 2001;10:75–81.
Dodel R, Peter H, Spottke A, et al. Health-related quality of life in patients with narcolepsy. Sleep Med. 2007;8:733–41.
Beusterien KM, Rogers AE, Walsleben JA, et al. Health-related quality of life effects of modafinil for treatment of narcolepsy. Sleep. 1999;22:757–65.
Ozaki A, Inoue Y, Nakajima T, et al. Health-related quality of life among drug-naïve patients with narcolepsy with cataplexy, narcolepsy without cataplexy, and idiopathic hypersomnia without long sleep time. J Clin Sleep Med. 2008;4:572–8.
Ozaki A, Inoue Y, Hayashida K, et al. Quality of life in patients with narcolepsy with cataplexy, narcolepsy without cataplexy, and idiopathic hypersomnia without long sleep time: comparison between patients on psychostimulants, drug-naïve patients and the general Japanese population. Sleep Med. 2012;13:200–6.
Scharf MB, Brown D, Woods M, Brown L, Hirschowitz J. The effects and effectiveness of gamma-hydroxybutyrate in patients with narcolepsy. J Clin Psychiatry. 1985;46:222–5.
Dauvilliers Y, Molinari N, Espa F, et al. Delay of diagnosis of narcolepsy in a European and in a North American population. J Sleep Res. 1998;7 Suppl 2:56.
Moldofsky H, Broughton RJ, Hill JD. A randomized trial of the long-term, continued efficacy and safety of modafinil in narcolepsy. Sleep Med. 2000;1:109–16.
Broughton RJ, Fleming JA, George CF, et al. Randomized, double-blind, placebo-controlled crossover trial of modafinil in the treatment of excessive daytime sleepiness in narcolepsy. Neurology. 1997;49:444–51.
Wing YK, Chen L, Fong SY, et al. Narcolepsy in Southern Chinese patients: clinical characteristics, HLA typing and seasonality of birth. J Neurol Neurosurg Psychiatry. 2008;79:1262–7.
Morrish E, King MA, Smith IE, Shneerson JM. Factors associated with a delay in the diagnosis of narcolepsy. Sleep Med. 2004;5:37–41.
American Academy of Sleep Medicine. International Classification of Sleep Disorders: Diagnostic and Coding Manual. 2nd ed. Westchester: American Academy of Sleep Medicine; 2005.
Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991;14:540–5.
Mosca L, Ferris A, Fabunmi R, Robertson RM. Tracking women's awareness of heart disease. Circulation. 2004;109:573–9.
Juby AG, Davis P. A prospective evaluation of the awareness, knowledge, risk factors and current treatment of osteoporosis in a cohort of elderly participants. Osteoporosis Int. 2001;12:617–22.
Pancioli AM, Broderick J, Kothari R, et al. Public perception of stroke warning signs and knowledge of potential risk factors. JAMA. 1998;279:1288–92.
Connor J, Norton R, Ameratunga S, et al. Driver sleepiness and risk of serious injury to car occupants: population based case control study. BMJ. 2002;324:1125.
Komada Y, Nishida Y, Namba K, Abe T, Tsuiki S, Inoue Y. Elevated risk of motor vehicle accident for male drivers with obstructive sleep apnea syndrome in the Tokyo metropolitan area. Tohoku J Exp Med. 2009;219:11–6.
Dahl RE, Holttum J, Trubnick L. A clinical picture of child and adolescent narcolepsy. J Am Acad Child Adolesc Psychiatry. 1994;33:834–41.
Broughton WA, Broughton RJ. Psychosocial impact of narcolepsy. Sleep. 1994;17:S45–9.
Farquhar JW, Wood PD, Breitrose H, et al. Community education for cardiovascular health. Lancet. 1977;309:1192–5.
Aizawa R, Sunahara H, Kume K, et al. Status of narcolepsy-related information available on the internet in Japan and its effective use. Sleep Biol Rhythms. 2008;6:201–7.
Oka Y, Inoue Y. Clinical features of pediatric patients visiting sleep clinic. Jpn J Sleep Med. 2008;2:187–91 (in Japanese).
Stein MA, Mendelsohn J, Obermeyer WH, Amromin J, Benca R. Sleep and behavior problems in school-aged children. Pediatrics. 2001;107:E60.
Spruyt K, O’brien LM, Cluydts R, Verleye GB, Ferri R. Odds, prevalence and predictors of sleep problems in school-age normal children. J Sleep Res. 2005;14:163–76.
Fukuda K, Ishihara K. Age-related changes of sleeping pattern during adolescence. Psychiatry Clin Neurosci. 2001;55:231–2.
Rye DB, Dihenia B, Weissman JD, Epstein CM, Bliwise DL. Presentation of narcolepsy after 40. Neurology. 1998;50:459–65.
Mukai J, Inoue Y, Honda Y, et al. Clinical characteristics of essential hypersomnia yndrome. Sleep Biol Rhythms. 2003;1:229–31.
Billiard M. Diagnosis of narcolepsy and idiopathic hypersomnia. An update based on the International Classification of Sleep Disorders, 2nd edition. Sleep Med Rev. 2007;11:377–88.
Acknowledgments
The authors thank all of the colleagues, patients, and families who participated in this study.
Conflict of Interests
None.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Ueki, Y., Hayashida, K., Komada, Y. et al. Factors Associated with Duration Before Receiving Definitive Diagnosis of Narcolepsy among Japanese Patients Affected with the Disorder. Int.J. Behav. Med. 21, 966–970 (2014). https://doi.org/10.1007/s12529-013-9371-5
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12529-013-9371-5