1Director of Research, NeuroTrials Research, Inc; Director, The Atlanta School of Sleep Medicine and Technology, Atlanta, GA.
Postgrad Med. 2014 Jan;126(1):78-86. doi: 10.3810/pgm.2014.01.2727.
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.
发作性睡病是一种由控制患者睡眠和觉醒状态的通路失调引起的使人虚弱的睡眠障碍。尽管人们对发作性睡病的总体认识有所提高，但以前没有研究描述过普通人群或医生对这种疾病的认识和看法。我们的调查评估了普通人群和医生（包括睡眠专家）样本中对发作性睡病的理解和认识。发作性睡病意识和知识（AWAKEN）调查包括来自美国的 1000 名成年人、300 名初级保健医生（PCP）和 100 名睡眠医学专家（36%为委员会认证）的样本，由哈里斯互动公司于 2012 年 5 月在线进行。使用双侧 t 检验进行描述性分析，P<0.05 具有统计学意义。尽管 70%的普通公众受访者听说过发作性睡病，但相对于其他需要长期治疗的慢性疾病，它的知晓率最低。总体而言，62%的睡眠专家和 24%的 PCP 认为自己对发作性睡病“非常”或“极其”了解；然而，只有 42%和 9%的睡眠专家和 PCP 分别认为自己“非常”或“极其”能够诊断该疾病。只有 22%的睡眠专家和 7%的 PCP 能够识别出所有 5 种关键的发作性睡病症状；普通人群中没有任何参与者能识别出所有 5 种症状。63%的睡眠专家和 39%的 PCP 认识到两种最突出的发作性睡病症状，即白天过度嗜睡和猝倒。即使在睡眠医学专家中，对发作性睡病及其症状的理解也存在很大差距。我们的研究结果表明，需要开展针对医生的教育活动，以提高对发作性睡病症状的认识。
