Wake Up Narcolepsy Physician Survey Shows Significant Challenges in Successful Diagnosis of Narcolepsy

Large gap exists between physicians perceived knowledge of narcolepsy and ability to effectively diagnose condition

86% of surveyed physicians report it takes anywhere from 2 to 10 years to diagnose narcolepsy

Less than 5% of respondents are able to identify all five key narcolepsy symptoms

WORCESTER, Mass., Sept. 22, 2022 /PRNewswire/ -- Wake Up Narcolepsy (WUN), a national leader for narcolepsy research and awareness, today announced the results of a survey of 100 physicians who treat narcolepsy in children and adolescents in the Greater Boston Area. These findings, which coincide with World Narcolepsy Day, highlight the challenges of identifying, managing and treating narcolepsy in this patient population.

"Narcolepsy is a lifelong neurological disorder typically starting in adolescence/early adulthood caused by the brain's inability to regulate sleep and wake states. Narcolepsy usually presents with severe and debilitating daytime sleepiness. Early diagnosis of narcolepsy is critical to ensuring a successful treatment plan and promoting safety. However, due to lack of awareness about narcolepsy among healthcare providers and difficulties teasing out narcolepsy symptoms from other conditions or co-morbidities, narcolepsy diagnosis is often delayed, especially among children and adolescents," said Dr. Kiran Maski, Physician in the Department of Neurology at Boston Children's Hospital and Associate Professor of Neurology at Harvard Medical School. "These survey results are illuminating, as they highlight improved physician knowledge about narcolepsy compared to previously published data. Still, diagnostic delays persist so there remains a continued need to educate healthcare providers and the public about narcolepsy symptoms to achieve timely diagnosis and treatment for patients. I believe these survey insights will help to improve education, reduce the time from symptoms to diagnosis, and enhance the overall treatment experience for patients and their families."

Key survey findings:

• Over half of physicians (57%) claim to be very comfortable diagnosing narcolepsy, and most (66%) only sometimes consider narcolepsy top of mind when diagnosing or treating children and adolescents.
• Very few physicians (4%) are able to identify all five CHESS (cataplexy, hallucinations, excessive daytime sleepiness, sleep paralysis, sleep disruption) symptoms of narcolepsy and fewer than half (48%) can identify at least three or more symptoms.
• Physicians typically look for excessive daytime sleepiness (64%), sleep paralysis (63%), changes in REM sleep (62%) and weight changes (62%) when diagnosing narcolepsy.
• Most physicians (86%) report it takes anywhere from 2 to 10 years to diagnose narcolepsy.
• Respondents reported that on average nearly two-thirds (64%) of all children and adolescents with narcolepsy have been misdiagnosed with other disorders.
• Insomnia (79%), idiopathic hypersomnia (64%), anxiety/depression (60%) and epilepsy/seizures (60%) are the most frequently reported misdiagnoses.
• The majority of respondents (87%) primarily rely on Polysomnography (PSG) testing and the Multiple Sleep Latency Test (MSLT) to diagnose narcolepsy, but most (76%) hope to see more useful biomarkers in the future.

"As we celebrate World Narcolepsy Day to bring awareness of this condition on a global scale, these data highlight the real challenges that exist around early diagnosis, and the critical importance of proper awareness and education of symptoms," said Monica Gow, Co-Founder and Executive Director of Wake Up Narcolepsy. "While advancements have been made, on average, it can still take up to 10 years for an official narcolepsy diagnosis and significant barriers to early detection and treatment among treating physicians remain. With these data in-hand, we remain committed to building upon existing work and to continue shaping future advocacy, educational, and treatment initiatives so children with narcolepsy and their loved ones do not have to wait years for a diagnosis."

To learn more about WUN and to view the full survey results, please visit www.wakeupnarcolepsy.org/wun-news/.

Research Methodology
This research was conducted online by FTI Consulting's digital & insights team among N=100 physicians [neurologists, sleep specialists, pediatricians, psychiatrists, practicing physicians, pulmonologists, and advance practice providers (NPs/PAs)] treating narcolepsy in children and adolescents in Greater Boston Area, between the dates of September 1st –14th, 2022. For any questions about the research methodology, please contact [email protected].

About the Wake Up Narcolepsy (WUN) Physician Survey
The Wake Up Narcolepsy Physician survey was designed to help inform the narcolepsy and broader healthcare community about existing treatment challenges, identify unmet needs among physician education, and ultimately reduce the time from symptom emergence to diagnosis for patients and their families.

About Narcolepsy
Narcolepsy is a lifelong neurological condition that impedes the brain's ability to regulate sleep and wake cycles. It affects 1 in every 2,000 individuals with a genetic predisposition activated by an environmental trigger. Typical onset of narcolepsy occurs between the ages of ten and twenty but can also occur in young children. Symptoms vary from individual to individual, with some cases being more severe than others. In individuals with narcolepsy, aspects of rapid eye movement (REM) sleep intrude on wakefulness while wakefulness intrudes on their sleep.

Individuals with narcolepsy may quickly enter into REM sleep without first experiencing non-rapid eye movement (NREM) sleep at night and during the day. Some of the characteristics of narcolepsy — such as cataplexy, sleep paralysis, and hallucinations — are similar to changes that occur in REM sleep, but instead, they occur during wakefulness or drowsiness. There are two main types of narcolepsy: narcolepsy with cataplexy (Type 1) and narcolepsy without cataplexy (Type 2).

About Wake Up Narcolepsy
Wake Up Narcolepsy (WUN) is a 501(c)(3) not-for-profit organization founded in 2008 to promote narcolepsy research and awareness. The organization is dedicated to providing funding research into the causes, prevention, treatments and a cure for narcolepsy while increasing awareness amongst the public. Every year, WUN hosts various awareness-driven events and substantially contributes to cutting-edge narcolepsy research.

Media Contacts
Wake Up Narcolepsy 
Monica Gow
508-259-1100
[email protected]

OR

FTI Consulting
Robert Stanislaro
212-850-5657
[email protected]

SOURCE Wake Up Narcolepsy