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Evaluating the Impact of Narcolepsy on Quality of Life

Narcolepsy can be socially disabling and isolating.1,2

Talking to your patients about the impact of sleepiness and other symptoms on their functioning and quality of life is important.

  • What is the impact of narcolepsy on daily activities?3,4
    • Watching TV, movies
    • Sitting and reading
    • Talking with someone
    • In a car stopped at traffic
    • During meetings
    • Attending class
    • Cooking
  • What is the impact of narcolepsy on neurocognitive functioning?1,2,4,5
    • Memory
    • Concentration
    • Decision making
    • Reading
    • Vigilance (e.g., ability to sustain performance on desired tasks)
  • What is the impact of narcolepsy on driving or occupational safety (operating a motor vehicle/driving)?4,5
  • What is the impact of narcolepsy on productivity?4,6
    • Academic performance (e.g., staying awake during class)
    • Job performance (e.g., staying awake during meetings) or ability to keep a job
  • What is the impact of symptoms on social functioning?4,6
    • Interacting with friends and family
    • Close interpersonal relationships
    • Making and keeping plans
    • Intimate relationships
  • What is the impact of symptoms on mood or mental disorders?2,5,7,8
    • Direct impact on mood (e.g., sadness, embarrassment, irritability)5,6
    • Ability to experience full range of emotions (flat affect?)10
    • Comorbid mood disorders2,5,8,9
      • Depression
      • Anxiety
      • ADHD
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  1. American Academy of Sleep Medicine. International Classification of Sleep Disorders. 3rd ed.; 2014.
  2. 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.
  3. Johns M, Hocking B. Daytime sleepiness and sleep habits of Australian workers. Sleep. 1997;20(10):844-849.
  4. Maski K, Steinhart E, Williams D, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med. 2017;13(3):419-425.
  5. Ahmed IM, Thorpy MJ. Clinical evaluation of the patient with excessive sleepiness. In: Thorpy MJ, Billiard M, eds. Sleepiness: causes, consequences and treatment. Cambridge University Press; 2011: 36-47.
  6. Daniels E, King MA, Smith IE, Shneerson JM. Health-related quality of life in narcolepsy. J Sleep Res. 2001;10(1):75-81.
  7. Kapella MC, Berger BE, Vern BA, Vispute S, Prasad B, Carley DW. Health-related stigma as a determinant of functioning in young adults with narcolepsy. PLoS One. 2015;10(4):1-12.
  8. Ohayon MM. Narcolepsy is complicated by high medical and psychiatric comorbidities: a comparison with the general population. Sleep Med. 2013;14(6):488-492.
  9. Overeem S. The clinical features of cataplexy. In: Baumann CR, Bassetti CL, Scammell TE, eds. Narcolepsy: Pathophysiology, Diagnosis, and Treatment. Springer-Verlag New York; 2011:283-290.

Performance of routine tasks without awareness.

Sudden and brief loss of muscle strength or tone, often triggered by strong emotions. Narcolepsy with cataplexy is known as type 1 narcolepsy.

Complete collapse to the ground; all skeletal muscles are involved.

Only certain muscle groups are involved.

Biological clock mechanism that regulates the 24-hour cycle in the physiological processes of living beings. It is controlled in part by the SCN in the hypothalamus and is affected by the daily light-dark cycle.

Frequent inappropriate transitions between states of sleep and wakefulness.

The inability to stay awake and alert during the day.

A neurotransmitter that supports wakefulness. The TMN is the only source of histamine in the brain.

Vivid, realistic, and frightening dream-like events that occur when falling asleep.

A neuropeptide that supports wakefulness and helps control non-REM sleep and REM sleep.

Primary brain region for regulating the timing of sleep-wake states.

Unintentionally falling asleep due to excessive daytime sleepiness.

Brief, unintentional lapses into sleep or loss of awareness.

A validated objective measure of the tendency to fall asleep in quiet situations.

A state of sleep when muscle tone is decreased. Deep stages help to restore the body.

Overnight study used to diagnose sleep disorders by monitoring sleep stages and cycles to detect disruptions of a normal sleep pattern.

Normally occurs at night and includes vivid dreams. Also known as “paradoxical sleep.”

Daytime and evening habits and routines to help improve nighttime sleep.

Brief loss of control of voluntary muscles with retained awareness.

Sleep-onset REM period.

People with type 1 narcolepsy have low levels of hypocretin.

Narcolepsy without cataplexy; the cause of type 2 narcolepsy is unknown.