Health-related quality of life in narcolepsy

Narcolepsy is a chronic sleep disorder characterised by symptoms of excessi ve daytime sleepiness and cataplexy. The aim of this study was to describe the health-related quality of life of people with narcolepsy residing in th e UK. The study comprised a postal survey of 500 members of the UK narcolep sy patient association, which included amongst other questions the UK Short Form 36 (SF-36); the Beck Depression Inventory (BDI), and the Ullanlinna N arcolepsy Scale (UNS). A total of 305 questionnaires were included in the f inal analysis. The results showed that the subjects had significantly lower median scores on all eight domains of the SF-36 than normative data, and s cot-ed particularly poorly for the domains of role physical, energy/vitalit y, and social functioning. The BDI indicated that 56.9% of subjects had som e degree of depression. In addition, many individuals described limitations on their education, home, work and social life caused by their symptoms. T here was little difference between the groups receiving different types of medication. This study is the largest of its type in the UK, although the l imitations of using a sample from a patient association have been recognise d. The results are consistent with studies of narcolepsy in other countries in demonstrating the extensive impact of this disorder on health-related q uality of life.