Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Center for Healthy Aging, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark.
Sleep Med. 2012 Sep;13(8):1086-93. doi: 10.1016/j.sleep.2012.06.006. Epub 2012 Jul 25.
Despite the fact that narcolepsy is a chronic disorder affecting younger people, there is insufficient information about its societal burden, time course, and familiar effect. We aimed to estimate the factual direct and indirect costs of narcolepsy patients and their families in a national sample using a controlled study design.
PATIENTS/METHODS: Using records from the Danish National Patient Registry (1997-2009), all 816 narcolepsy patients and their partners were identified and compared with 3254 randomly chosen controls matched for age, gender, geographic area, and civil status. Direct and indirect costs, including frequencies of primary and secondary sector contacts' and procedures, medication, labor supply, and social transfer payments were extracted from the national databases.
Fewer patients (46.7%) than controls (51.4%) were married or cohabiting. Patients with narcolepsy had significantly higher rates of health-related contact, medication use, and a higher socioeconomic cost. Furthermore, they had lower employment rates, and those in employment had a lower income level than control subjects. Partners presented higher public health insurance and public transfers and lower income from employment. In all, the annual mean excess health-related cost, including social transfers, was €9572 for patients with narcolepsy and €3606 for their partners (both p<0.001). Patient consequences could be identified up to 11 years before first diagnosis and became more pronounced as the disease advanced.
Narcolepsy causes socioeconomic consequences, not only for patients, but also for their partners, which is present years prior to disease diagnosis, confirming a diagnostic delay.
尽管嗜睡症是一种影响年轻人的慢性疾病，但关于其社会负担、病程和常见影响的信息还不够充分。我们旨在使用对照研究设计，在全国样本中估计嗜睡症患者及其家属的实际直接和间接成本。
患者/方法：利用丹麦国家患者登记处（1997-2009 年）的记录，确定了所有 816 名嗜睡症患者及其配偶，并与 3254 名随机选择的年龄、性别、地理区域和婚姻状况相匹配的对照进行了比较。从国家数据库中提取了直接和间接成本，包括初级和二级卫生保健部门接触和程序、药物、劳动力供应以及社会转移支付的频率。
与对照组（51.4%）相比，患者（46.7%）结婚或同居的比例较低。嗜睡症患者的健康相关接触、药物使用和更高的社会经济成本明显更高。此外，他们的就业率较低，就业者的收入水平也低于对照组。总的来说，包括社会转移支付在内，每年的平均超额健康相关成本为嗜睡症患者 9572 欧元，其配偶为 3606 欧元（均<0.001）。患者的后果可以在首次诊断前 11 年内被识别，并且随着疾病的进展而变得更加明显。
嗜睡症不仅会给患者，也会给其配偶带来社会经济后果，这种情况在疾病诊断前就已经存在多年，这证实了诊断的延误。
