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Considerations for Disease Management

A comprehensive approach to long-term narcolepsy management is important.1-3

Management Considerations

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The AASM has developed quality measures for the care of patients with narcolepsy, which include reduction of excessive daytime sleepiness and improved accuracy of diagnosis as desired outcomes. To help improve EDS, the AASM recommends quantifying daytime sleepiness with a validated scale at every visit and initiating treatment within a month of narcolepsy diagnosis. Improved accuracy of diagnosis should be achieved by documenting a comprehensive sleep history in patients with narcolepsy and using standardized objective sleep assessments, such as PSG and MSLT.4

Behavioral Approaches to Disease Management5

Education icon for 4 behavioral approaches to disease management

Education - Highlight the importance of treatment adherence, maintaining good sleep hygiene including strategic napping; lifestyle reorganization; behavioral techniques

Reoccuring Assessment icon for 4 behavioral approaches to disease management

Reoccurring Assessments - Objective, subjective, or self-report; regular evaluation of functioning and treatment effects; using sleep actigraphs and/or sleep logs; administering Epworth Sleepiness Scale, Maintenance of Wakefulness Test, Stanford Sleepiness Scale, or other related validated measure(s)

CBT-N icon for 4 behavioral approaches to disease management

CBT-N - Techniques targeting the behavioral management of narcolepsy symptoms: talk therapy targeting distorted cognitions, treatment adherence, taking medications at appropriate times, maintaining good sleep hygiene, taking scheduled naps, imagery, and hypnosis

CBT-N icon for 4 behavioral approaches to disease management

Psychosocial Implications - Occupational considerations and professional advocacy (eg, legal rights); available resources in the community, such as a Narcolepsy Support Group

AASM, American Academy of Sleep Medicine; CBT-N, cognitive behavioral therapy for narcolepsy; EDS, excessive daytime sleepiness; MSLT, multiple sleep latency test; PSG, polysomnography

Narcolepsy is a chronic neurologic condition that usually warrants long-term management.1,6,7

The increased frequency of comorbidities among patients with this condition should be considered when developing management strategies.1,2,8 Comprehensive evaluation that assesses both symptoms and coexisting medical and psychiatric comorbidities is crucial to narcolepsy management.2,3,9

As part of a management plan, lifestyle changes may also be necessary to help address the risk of comorbidities.2,10,11 This highlights the need to look beyond symptom control and consider broader lifelong health implications when managing patients with narcolepsy.1,2,6,10

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  1. Thorpy MJ, Hiller G. The medical and economic burden of narcolepsy: implications for managed care. Am Health Drug Benefits. 2017;10(5):233-241.
  2. Morse AM. Narcolepsy in children and adults: a guide to improved recognition, diagnosis and management. Med Sci (Basel). 2019;7(12):106.
  3. Wise MS, Arand DL, Auger RR, Brooks SN, Watson NF; American Academy of Sleep Medicine. Treatment of narcolepsy and other hypersomnias of central origin. Sleep. 2007;30(12):1712-1727.
  4. Krahn LE, Hershner S, Loeding LD, et al. Quality measures for the care of patients with narcolepsy. J Clin Sleep Med. 2015;11(3):335-355.
  5. Bhattarai J, Sumerall S. Current and future treatment options for narcolepsy: a review. Sleep Sci. 2017;10(1):19‐27
  6. Thorpy M, Morse AM. Reducing the clinical and socioeconomic burden of narcolepsy by earlier diagnosis and effective treatment. Sleep Med Clin. 2017;12(1):61-71.
  7. National Institute of Neurological Disorders and Stroke. Narcolepsy fact sheet. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet. Accessed November 10, 2020.
  8. Black J, Reaven NL, Funk SE, et al. Medical comorbidity in narcolepsy: findings from the Burden of Narcolepsy Disease (BOND) study. Sleep Med. 2017;33:13-18.
  9. Krahn LE, Zee PC, Thorpy MJ. Current understanding of narcolepsy 1 and its comorbidities: what clinicians need to know. Adv Ther. 2022;39(1):221-243.
  10. Thorpy MJ, Dauvilliers Y. Clinical and practical considerations in the pharmacologic management of narcolepsy. Sleep Med. 2015;16(1):9-18.
  11. de Biase S, Gigli GL, Valente M. Important decisions in choosing the pharmacotherapy for narcoleptics. Expert Opin Pharmacother. 2019;20(5):483-486.
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