Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Faculty of Health Sciences, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark.
J Clin Sleep Med. 2009 Jun 15;5(3):240-5.
Narcolepsy is a chronic neurodegenerative disorder with a typical onset in childhood or early adulthood. Narcolepsy may have serious negative effects on health-, social-, education-, and work-related issues for people with narcolepsy and for their families. The disease may, thus, present a significant socioeconomic burden, but no studies to date have addressed the indirect and direct costs of narcolepsy.
Using records from the Danish National Patient Registry (1998-2005), we identified 459 Danish patients with the diagnosis of narcolepsy. Using a ratio of 1 patient record to 4 control subjects' records, we then compared the information of patients with narcolepsy with that of 1836 records from age- and sex-matched, randomly chosen citizens in the Danish Civil Registration System Statistics. We calculated the annual direct and indirect health costs, including labor supply and social transfer payments (which include income derived from state coffers, such as subsistence allowances, pensions, social security, social assistance, public personal support for education, etc.). Direct costs included frequencies and costs of hospitalizations and weighted outpatient use, according to diagnosis-related groups, and specific outpatient costs based on data from The Danish Ministry of Health. The use of and costs of drugs were based on data from the Danish Medicines Agency. The frequencies and costs from primary sectors were based on data from The National Health Security. Indirect costs were based on income data derived from data from the Coherent Social Statistics.
Patients with narcolepsy had significantly higher rates of health-related contact and medication use and higher expenses, as compared with control subjects. They also had higher unemployment rates. The income level of patients with narcolepsy who were employed was lower than that of employed control subjects. The annual total direct and indirect costs were euro 11,654 (euro = Eurodollars) for patients with narcolepsy and euro 1430 for control subjects (p < 0.001), corresponding to an annual mean excess health-related cost of euro 10,223 for each patient with narcolepsy. In addition, the patients with narcolepsy received an annual social transfer income of euro 2588.
The study confirms that narcolepsy has major socioeconomic consequences for the individual patient and for society. Early diagnosis and treatment could potentially reduce disease burden, which would have a significant socioeconomic impact.
发作性睡病是一种慢性神经退行性疾病，通常在儿童或成年早期发病。发作性睡病可能会对患者及其家属的健康、社交、教育和工作相关问题产生严重的负面影响。因此，这种疾病可能会带来巨大的社会经济负担，但迄今为止尚无研究涉及发作性睡病的间接和直接成本。
利用丹麦国家患者登记数据库（1998-2005 年）中的记录，我们确定了 459 例丹麦发作性睡病患者。我们使用患者记录与 4 名对照记录的比例（1:4），将这些患者的信息与丹麦民事登记系统统计数据库中年龄和性别相匹配的随机选择的 1836 名公民的信息进行了比较。我们计算了年度直接和间接卫生成本，包括劳动力供应和社会转移支付（包括国家财政收入，如生活津贴、养老金、社会保障、社会救助、公共个人教育支持等）。直接成本包括根据疾病相关分组计算的住院和加权门诊使用频率和成本，以及根据丹麦卫生部的数据计算的特定门诊成本。药物使用和成本基于丹麦药品管理局的数据。初级部门的使用和成本基于国家健康保障局的数据。间接成本基于从连贯社会统计数据中获得的收入数据。
与对照组相比，发作性睡病患者的健康相关接触和药物使用频率更高，费用也更高。他们的失业率也更高。发作性睡病患者的就业收入水平低于对照组。发作性睡病患者的年度直接和间接总成本为 11654 欧元（欧元=欧元），对照组为 1430 欧元（p<0.001），这意味着每位发作性睡病患者的年平均额外健康相关费用为 10223 欧元。此外，发作性睡病患者每年还获得 2588 欧元的社会转移收入。
该研究证实发作性睡病会给个体患者和社会带来重大的社会经济后果。早期诊断和治疗可能会降低疾病负担，从而产生重大的社会经济效益。
