Study objective: To evaluate the economic burden of patients suffering from narcolepsy.
Design: Cross-sectional study.
Participants: 75 narcoleptic patients diagnosed at the Hephata Klinik, Germany, who met the International Classification of Sleep Disorders criteria for narcolepsy.
Measurements: A standardized telephone interview was used to inquire about the disease and its burden. In addition, health-related quality of life scales (SF-36 and EQ-5D) were mailed to the patients. Complete data were available for 75 patients. Direct and indirect costs were calculated from the societal perspective. All costs (mean +/- SD) were calculated in 2002 Euros (Euros).
Results: Total annual costs were Euros 14,790 +/- 16,180 (US-dollars 15,410) per patient. Direct costs were Euros 3,180 +/- 3,540 (US-dollars 3,310), which consisted of hospital costs (Euros 1,210 +/- 2,210; US-dollars 1,260), drug costs (narcolepsy medication: Euros 1,020 +/- 1,420; US-dollars 1,060), ambulatory care (Euros 90 +/- 90; US-dollars 40), and ambulatory diagnostics (Euros 20 +/- 30; US-dollars 20). More than 50% of the drug costs were due to the newer wake-promoting drugs. Total annual indirect costs amounted to Euros 11,390 +/- 15,740 (US-dollars 11,860) per patient and were mainly attributable to early retirement due to the disease. Narcolepsy was listed as being the cause of unemployment by 32 patients. In patients with sleep attacks, there was a significant correlation between early retirement and higher indirect costs compared to patients without these attacks.
Conclusions: Narcolepsy causes a high socioeconomic burden, which is comparable to other chronic neurologic diseases, Indirect costs are considerably higher than direct costs. Measures should be taken to increase public awareness of this disease. Appropriate treatment must be provided in order to increase quality of life and to assist patients continuing in working life.