Abstract
Narcolepsy type 1 is a chronic neurological sleep disorder. In addition to the classical narcolepsy symptoms such as excessive daytime sleepiness, sleep hallucinations, sleep paralysis and loss of muscle tone when experiencing strong emotions, patients may have other symptoms and comorbidities.
After the vaccination campaign in Norway in 2009 with the swine flu vaccine, Pandemrix, the incidence of narcolepsy type 1 in Norway increased. Furthermore, symptoms were severe and young children were among those affected.
The aims of this thesis were to characterize the phenotype of patients in Norway who developed narcolepsy type 1 after the swine flu epidemic and vaccination campaign. Primary focus was on health related quality of life, psychiatric symptoms and medical comorbidities, in particular overweight and obesity.
Patients included in this study were hospitalized for 2-4 days and underwent sleep investigations, physical examinations and took part in semi-structured interviews.
We found that health related quality of life was impaired but there was an improvement in health related quality of life after 2 years of follow-up. Further, we found a high prevalence of psychiatric symptoms, especially in the domain of internalizing symptoms, such as depression and social anxiety. Approximately half of the population had one or several medical comorbidities. In children, 70 % of girls and 10 % of boys were overweight or obese. Among adults, 58 % of women and 70 % of men were overweight or obese. Severe fatigue was reported in both children and adults.
Overall, we found that narcolepsy is complicated with psychiatric and medical comorbidities and may have severe consequences for patients’ lives. Our study highlights the importance of monitoring patients with narcolepsy to pursue close individual follow up in order to prevent comorbidities and secondary complications as well as to enable better treatment and improve health related quality of life.