New survey sheds light on the impact of narcolepsy
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By Dr. Michael Thorpy
Over the last few decades much progress has been made in the understanding and treatment of narcolepsy. However, despite major advances, narcolepsy still is difficult to treat and can greatly affect the quality of life of patients. As a board-certified specialist in sleep disorders medicine with more than 20 years of experience treating the disorder, I see the impact that narcolepsy has on my patients every day.
We all get sleepy from time to time, but for those who live with narcolepsy, a rare, chronic neurologic disorder of sleep-wake state instability, sleepiness is irrepressible throughout the day and may impact many aspects of daily life. In order to advance awareness of narcolepsy and understand the perspectives of treating physicians, people living with narcolepsy and the general public, I collaborated with both Harmony Biosciences and the Narcolepsy Network, a patient organization, on the Know Narcolepsy® survey. The survey findings from 251 physicians, 200 people living with narcolepsy and 1,203 U.S. adults highlight a lack of understanding about how much the disorder can impact daily life, and reinforces the need for improved education and treatment options.
The impact of narcolepsy on the patient can be substantial. The disorder, unmanaged, can affect many aspects of one’s life — including relationships, school, and work. In fact, the survey showed that 45 percent of people living with narcolepsy agreed the disorder controls their lives, and 68 percent agreed they never feel like a “normal” person because of the disorder. However, 78 percent of the general public surveyed agreed they had no idea what it must be like to live with narcolepsy.
The portrayal of narcolepsy in entertainment media contributes to the lack of understanding and misperception of the disorder. In fact, 84 percent of physicians and 74 percent of people living with narcolepsy surveyed agreed social media and entertainment industry have a distorted view of narcolepsy.
The survey also highlighted the complexity of the disorder and the difficulty that physicians have in identifying symptoms. Physicians surveyed reported that often symptoms may be inaccurately attributed to other medical conditions, such as depression and insomnia. On average, survey respondents living with narcolepsy reported it took six or more years to reach a diagnosis after experiencing their first symptom. Even when diagnosis is confirmed, the symptoms of narcolepsy, including excessive daytime sleepiness and cataplexy, remain difficult to effectively treat and manage. The survey showed that only 12 percent of people living with narcolepsy agreed their symptoms are mostly or under control, and more than 90 percent expressed frustration with current treatment options, agreeing new treatments are needed.
The progress we’ve made over the past decade alone has allowed us to make a meaningful difference in patients’ lives, but the results of the Know Narcolepsy® survey show us there is continued need for awareness of this disorder, more information and resources and additional treatment options. I am hopeful that increased dialogue and awareness about narcolepsy’s impact will help further advance patient care. For more about the survey results and narcolepsy, please visit KnowNarcolepsy.com.
Dr. Michael Thorpy is a consultant for Harmony Biosciences, LLC and the director of the Sleep-Wake Disorders Center at the Montefiore Medical Center, Bronx, New York.
The three-part Know Narcolepsy® survey was conducted by Versta Research on behalf of Harmony Biosciences, LLC, and in collaboration with Narcolepsy Network. The research was conducted online in March, April and August, 2018. The respondents were recruited from large national research panels used exclusively for research, and included 200 U.S. adults with narcolepsy, 1,203 U.S. adults without narcolepsy, and 251 physicians currently in clinical practice who have treated patients with narcolepsy in the last two years.