Results of a three-part survey of those living with narcolepsy (n=200), treating physicians (n=251), and the general public (n=1,203) spotlight the impact of this rare, chronic neurologic disorder on daily life. The Know Narcolepsy survey, conducted by Versta Research among a total of 1,654 respondents on behalf of Harmony Biosciences LLC, in collaboration with patient advocacy organization, Narcolepsy Network, highlighted that narcolepsy is life-changing for the majority (86%, n=172) of those surveyed living with the disorder. However, 78% (n=938) of the general public surveyed agreed they have no idea what it must be like to live with narcolepsy.
Among people living with narcolepsy surveyed (n=200):
- Over two-thirds (68%, n=136) agreed they never feel like a normal person because of the disorder and 80% (n=160) said living with narcolepsy is a daily struggle.
- More than half (54%, n=108) agreed narcolepsy controls their lives.
- 76% (n=152) agreed the disorder has affected important moments in their lives.
- More than a third (37%, n=74) reported having failed a class at school or having withdrawn entirely because of symptoms of narcolepsy.
- One in four (25%, n=50) reported they have been fired from a job or demoted because of problems related to narcolepsy, and among those currently employed, a majority (60%, n=55) agreed they were worried about losing their jobs because of the disorder.
“Narcolepsy is a serious, neurological disorder that impacts many aspects of life, including family, school, careers, and relationships, if not appropriately managed,” says Michael Thorpy, MD, director of the Sleep-Wake Disorders Center at the Montefiore Medical Center in New York, in a release. “I’m hopeful that the survey results will encourage much-needed dialogue in the exam room, within the community and among the general public to help increase awareness and understanding, and to further advance patient care.”
The survey also underscored the complexity of the disorder and challenges in symptom recognition and diagnosis. According to people living with narcolepsy surveyed:
- They may spend years living with symptoms, and the journey to diagnosis can be long and complex. In fact, on average, it took 6+ years to be diagnosed following the onset of their symptoms.
- Four out of 10 (38%, n=76) were initially misdiagnosed with another condition, most commonly (25%, n=50) with depression.
- According to literature, about two-thirds of people living with narcolepsy have cataplexy, a sudden and brief loss of muscle strength or tone brought on by emotions or situations. Yet, only a quarter of those living with narcolepsy surveyed (26%, n=52) reported having cataplexy to their physician, and over half (54%, n=108) reported knowing little to nothing about cataplexy.
- Nearly all (94%, n=188) agreed there is more to be done to improve communication and further education.
“The mischaracterization of narcolepsy in our culture fuels the stigma associated with the disorder, which is detrimental to the narcolepsy community and further isolates people living with narcolepsy,” says Eveline Honig, MD, MPH, executive director of Narcolepsy Network, a national patient support organization dedicated to education and support for the community. “These survey results shed light on the issue and help advance awareness, compassion and understanding toward those living with narcolepsy.”
Even with treatment, people living with narcolepsy continue to feel the impact of their symptoms. Nearly all (94%, n=188) of people living with narcolepsy surveyed believed there is a need for more treatment options.
When asked about their biggest frustrations with medications for narcolepsy symptoms, 56% (n=112) said side effects, 46% (n=92) said loss of efficacy over time, 20% (n=40) said inconvenient to take, and 17% (n=34) said worries about abuse.
One in eight (12%, n=24) agreed their narcolepsy symptoms are completely or mostly under control.
Consistent with responses from people living with narcolepsy, nearly all of physicians surveyed (94%, n=235) agreed there is a need for new and better treatment options, and more than nine out of ten (95%, n=238) reported that medications offering new mechanisms of action would be valuable to them.