RESUMO
OBJECTIVES: Narcolepsy is a lifelong disabling disorder that may be alleviated by relevant treatment. Patients frequently report 10-15 years from the first symptoms to the time they get the diagnosis and treatment can be started. In order to offer a sufficient diagnostic and therapeutic service to this patient group, a reliable estimation of the prevalence of the disorder is important. A study of the prevalence of narcolepsy with cataplexy in Norway was therefore undertaken. MATERIALS AND METHODS: The Ullanlinna Narcolepsy scale (UNS) was sent to 14548 randomly selected Norwegians between 20 and 60 years. Additionally, the study included telephone interviews and clinical evaluation of responders with >or=14 points on the UNS, and in those with suspected narcolepsy, polygraphic sleep recordings and human leucocyte antigen (HLA)-typing. RESULTS: A total of 8992 responders answered the questionnaire (response rate 61.8%), 267 had >or=14 points on the UNS, 156 were interviewed and 15 had sleep recordings. In two HLADQB1*0602-positive patients sleep recordings were compatible with narcolepsy. CONCLUSIONS: The results indicate a prevalence of 0.022% and approximately 1000 patients with narcolepsy with cataplexy in Norway.
Assuntos
Cataplexia/complicações , Cataplexia/epidemiologia , Narcolepsia/complicações , Narcolepsia/epidemiologia , Adulto , Cataplexia/genética , Feminino , Predisposição Genética para Doença , Antígenos HLA-DQ/genética , Cadeias beta de HLA-DQ , Humanos , Masculino , Glicoproteínas de Membrana/genética , Pessoa de Meia-Idade , Narcolepsia/genética , Noruega/epidemiologia , Prevalência , Índice de Gravidade de Doença , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVES: To describe health-related quality of life in Norwegian patients with narcolepsy compared with data from the general population. PATIENTS AND METHODS: Seventy-seven patients with narcolepsy with cataplexy were included in the final analysis. Health-related quality of life was assessed by SF-36 questionnaire. RESULTS: Men and women with narcolepsy had lower scores in all SF-36 domains, except vitality. Most profoundly affected were bodily pain (men: p = 0.0001, women: p = 0.0001), social function (men: p = 0.0001, women: p = 0.0001) and general health (men p = 0.04, women: p = 0.0001). CONCLUSIONS: Narcolepsy has a clear negative effect on quality of life which is not sufficiently counteracted by medical treatment. We suggest that earlier diagnosis and treatment after onset of symptoms may be important in reducing the negative effects on quality of life. Special attention should be paid to the patients social functioning and general well-being.