The AWAKEN Survey: Knowledge of Narcolepsy among Physicians and the General Population

Abstract

Narcolepsy can be a debilitating sleep disorder resulting from the dysregulation of pathways that control the sleep and wake states of patients. Although overall knowledge of narcolepsy has increased, no previous studies characterize awareness and perceptions of this condition in the general population or among physicians. Our survey evaluated the understanding and perceptions of narcolepsy among individuals from the general population and from a sample of physicians, including sleep specialists. The Awareness and Knowledge of Narcolepsy (AWAKEN) survey included a sample of 1000 US adults, 300 primary care physicians (PCPs), and 100 sleep medicine specialists (36% board certified) and was conducted online by Harris Interactive in May 2012. Descriptive analysis was performed using 2–tailed t tests with a significance of P < 0.05. Although 70% of the general public respondents had heard of narcolepsy, it ranked lowest in awareness relative to other chronic diseases requiring long–term treatment. Overall, 62% of sleep specialists and 24% of PCPs considered themselves “very” or “extremely” knowledgeable about narcolepsy; however, only 42% and 9% of sleep specialists and PCPs, respectively, felt “very” or “extremely” comfortable diagnosing the disorder. Only 22% of sleep specialists and 7% of PCPs identified all 5 key narcolepsy symptoms; no participant in the general population could identify all 5 symptoms. Sixty–three percent of sleep specialists and 39% of PCPs recognized both of the most prominent narcolepsy symptoms, which are excessive daytime sleepiness and cataplexy. Substantial gaps exist in understanding narcolepsy and its symptoms, even among sleep medicine specialists. Our findings suggest a need for educational initiatives for physicians to improve recognition of narcolepsy symptoms.

Keywords:

• narcolepsy
• symptoms
• diagnosis
• burden
• population survey
• physician perspective