Quality of life and procrastination in post-H1N1 narcolepsy, sporadic narcolepsy and idiopathic hypersomnia, a Swedish cross-sectional study.

Objective/background: A cross-sectional study of health-related quality of life (HRQoL), procrastination and the relation to sleepiness, depression and fatigue in post-H1N1 narcolepsy type 1 (NT1), sporadic NT1 and idiopathic hypersomnia (IH).

Patients/methods: Participants with NT1 and IH were enrolled from the Department of Neurology, Sahlgrenska University Hospital in Gothenburg (Sweden). All participants completed questionnaires about medication, employment, studies, transfer income, sleepiness, HRQoL, depression, fatigue and three questionnaires for procrastination.

Results: Post-H1N1, sporadic NT1 and IH all scored higher than healthy controls on Epworth Sleepiness Scale (ESS), Patient Health Questionnaire (PHQ-9) and Fatigue Severity Scale (FSS), whereas EQ-5D-5L index and VAS was lower than for healthy individuals, but with no difference between groups. Post-H1N1 NT1 had a larger proportion of participants prescribed with sodium oxybate (44% vs. 9%, p = 0.003) and dexamphetamine (62% vs. 17%, p = 0.03) compared to sporadic NT1. The latter also in significantly higher doses than in sporadic NT1 (46 ± 12 vs. 25 ± 10 and 47.5 ± 21 mg, p < 0.0001). Post-H1N1 NT1 also had significantly higher scores on Pure Procrastination Scale (PPS), Irrational Procrastination Scale (IPS) and Susceptibility to Temptation Scale (STS), indicating a higher degree of procrastination. Multivariate analysis showed that depression, and to some extent fatigue, were predictors in NT1 for both HRQoL and procrastination.

Conclusions: The results show that health-related quality of life is impaired and tendency to procrastinate is higher in patients suffering from NT1 and both attributes can in part be explained by depressive symptoms. These findings highlight the impact of symptoms other than sleep and wakefulness regulation in patients with NT1.