Survey Finds Widespread Misconceptions About Sleep Disorders
According to results of a survey asking 1300 Americans about their perceptions and knowledge of sleep disorders like narcolepsy, many respondents were not familiar with common symptoms of the disease and their understanding was often shaped by television shows or movies.
The study, which was distributed and completed online in late August, was conducted by Toluna Analytics and sponsored by Jazz Pharmaceuticals, which markets several medicines for sleep disorders.
Although 83% of respondents had heard of narcolepsy, only 32% said that they were familiar with the symptoms. However, that familiarity did not always indicate that their knowledge was accurate: Of those who reported being familiar with the symptoms, only 10% correctly answered that all people with narcolepsy have excessive daytime sleepiness (EDS), which is the defining symptom of narcolepsy and is therefore present in all individuals with a diagnosis of narcolepsy.
About half (51%) of those who had heard of narcolepsy agreed that EDS could be a potential indicator of narcolepsy, and 73% had never heard of cataplexy, which is the most specific symptom of narcolepsy. Cataplexy, which is a sudden and brief loss of muscle tone while retaining consciousness and is often brought on by strong emotions, occurs in about 70% of people with narcolepsy.
Additionally, 43% of those who were aware of narcolepsy believed that patients with narcolepsy often fall down because they lose consciousness while walking or standing. In fact, cataplexy does not cause loss of consciousness, and it more commonly affects only certain muscle groups (eg, the face and jaw, limbs, head and neck) instead of causing complete collapse.
The finding that many respondents associated narcolepsy with an unconscious collapse may be a result of exaggerated portrayals of people with the disorder in popular media. Of those who reported they had heard of narcolepsy, 35% said they had heard about it from television shows and 24% from movies.
A limited understanding of sleep disorders likely contributes to low rates of seeking treatment. After learning about the definition of EDS, 65% of respondents reported commonly experiencing it and 15% reported experiencing it sometimes. The survey found that tiredness had significant effects on quality of life and safety among the respondents. For instance, 38% reported being too tired to concentrate at work and 45% reported a lack of motivation.
More seriously, 11% reported that they had been in a car accident resulting from being too tired and 20% said they had made a mistake that injured themselves or someone else. However, just 31% of the respondents answered that they had sought medical help for sleepiness or other sleep issues.
“These survey results reiterate that public understanding of narcolepsy is limited and often inaccurate and there is a need for the entire narcolepsy community, including patient advocacy organizations, researchers, clinicians, drug developers and local communities to continue working to help combat misperceptions about narcolepsy that are common among the general population in the [United States],” said Julie Flygare, JD, president and chief executive officer of Project Sleep, in a press release from Jazz announcing the survey findings.
Jazz Pharmaceuticals survey highlights prevalence of misinformation and misperception about narcolepsy among Americans [news release]. Dublin, Ireland: Jazz Pharmaceuticals; September 30, 2019. investor.jazzpharma.com/news-releases/news-release-details/jazz-pharmaceuticals-survey-highlights-prevalence-misinformation. Accessed September 30, 2019.