A recent study has confirmed that the American dream is neither conscious of narcolepsy nor attributes a sufficient degree of severity to the condition. Such a heavy-lidded outlook isn’t just limited to civilians, either — the report says physicians and sleep specialists are also predominantly in the dark when it comes to diagnosing the disorder.
Intended to gauge potential patient and professional cognizance, the "AWAKEN Survey: Awareness and Knowledge of Narcolepsy" — contracted by Jazz Pharmaceuticals and conducted by Harris Interactive — questioned 1,000 adult members of the general public (18+), 300 primary care physicians (PCPs) and 100 sleep specialists about their narcolepsy knowledge. What researchers uncovered was described by Russell Rosenberg, PhD, director of The Atlanta School of Sleep Medicine and Technology and current chairman of the National Sleep Foundation, as “more distressing and disturbing than shocking or surprising.”
The results are in…
Some of the AWAKEN study’s disquieting discoveries are as follows:
- Only 70 percent of adults had heard of narcolepsy, the lowest percentage when compared to the working knowledge subjects possessed regarding other diseases such as diabetes, sleep apnea, Alzheimer's, Parkinson's, multiple sclerosis, schizophrenia, restless leg syndrome and cystic fibrosis. Additionally, only 7 percent of those adults who claimed comprehension characterized themselves as "very or extremely knowledgeable" about narcolepsy.
- A quarter of PCPs (24 percent) distinguished themselves as "very or extremely knowledgeable" about narcolepsy compared to other diseases, while only about two-thirds of sleep specialists (62 percent) declared the “very or extremely knowledgeable” distinction.
- Just 22 percent of sleep specialists were able to identify all five symptoms of narcolepsy (excessive daytime sleepiness, cataplexy, sleep paralysis, hypnagogic hallucinations and disruptive nocturnal sleep.) Consequently, 42 percent of sleep specialists affirmed they were comfortable diagnosing narcolepsy. Of the PCPs queried, only 9 percent reiterated such comfort in making narcolepsy diagnoses.
- Although the majority of those surveyed found sleep to be of considerable importance, only 50 percent subscribed to the belief that narcolepsy can significantly affect one’s overall health.
- 75 percent of PCPs rated narcolepsy as one of the least austere conditions mentioned in the survey; 82 percent of sleep specialists gave narcolepsy a truncated severity rating.
- For PCPs and sleep specialists who see three or more narcolepsy patients a month on average, narcolepsy is one of the lesser discussed sleep disorders, trumping only sleep paralysis in level of acknowledgement.
Sara Kowalczyk, MA, MPH, president of the Narcolepsy Network, noted that despite the alarming nature of the results, the AWAKEN study provides ample advice regarding where informative efforts can be directed.
“The AWAKEN study concisely states the current perceptions of narcolepsy from multiple perspectives,” she said. “Having this type of ranking comparing narcolepsy to other diseases is tremendously important as it highlights where education and advocacy efforts can be directed to improve the perceptions of narcolepsy and its severity. The results pinpoint a common theme of under-recognition of the disease's severity across all groups surveyed, including comparisons to other diseases of similar prevalence (including Parkinson's and multiple sclerosis) and diseases affecting sleep (disorders including restless legs syndrome and sleep apnea).”
The American Sleep Association (ASA) estimates that, in accordance with current figures, less than half of the 125,000-200,000 narcolepsy sufferers have been diagnosed appropriately. It is also common practice, according to ASA statistics, for many patients to be diagnosed with narcolepsy some 10-15 years following the occurrence of initial symptoms. Rosenberg said these unfortunate, avoidable happenstances of the trade cost patients a great deal of anguish, both internally and externally.
“Narcolepsy can have a profound impact on someone’s life and, especially since this is a disorder that usually begins in early adolescence and childhood, someone who goes undiagnosed for many years really struggles with the problem and doesn’t achieve to their true capabilities as a result of it,” he said. “I see kids who are in school who suffer from the problem and until they’re really properly identified, they’re mis-categorized as learning disabled or deficient in some other way or even with behavioral problems. So it’s disturbing that a large number of physicians, including sleep specialists, as well as the general population don’t understand the disease very well.”
Kowalczyk described the narcolepsy diagnosing process as a difficult terrain for physicians to navigate. “While I am not a physician, it seems to me that making a narcolepsy diagnosis is not always straight-forward. Four of the five primary symptoms included in a narcolepsy diagnosis are also symptoms in a wide variety of other conditions, including daytime sleepiness and disrupted sleep at night. There is not an algorithm or set of questions to aid physicians in how they question patients complaining of sleepiness, probably the hallmark complaint in narcolepsy...I am not aware of one strategy that is commonly used across physician groups.”