Idiopathic Hypersomnia

Study Overview
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Brief Summary
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Idiopathic hypersomnia (IH) is characterized by non-restoring night-time sleep, excessive daytime sleepiness, sleep inertia, impaired cognitive functioning and autonomic symptoms. IH seems to be long lasting, once established, but little is known about long-time consequences, and research on the relationship between idiopathic hypersomnia and all-cause mortality is however sparse. IH is thus a poorly characterized disorder of hypersomnolence, and the present study aims to answer the following research questions: Are there subgroups within the IH-group, that can be retrospectively characterized out of data from polysomnography, PSG and MSLT. What are the relationships between IH, and possible IH subgroups, and morbidity, mortality, and sick leave, using retrospective register data? What is the natural course of IH, and possible IH subgroups, assessed with questionnaires that measures daytime sleepiness, depression, and insomnia? How do subjects diagnosed with IH think about their disease, cope with it, and perceive the effects of treatments, using qualitative interviews? 185 individuals assessed and diagnosed at the Sleep unit, Uppsala university hospital between 2010-01-01 and 2019-12-31 will be contacted. After collecting informed consents, PSG and MSLT data will be analysed together with register data regarding morbidity, mortality, sick leave, and pharmacotherapy.Questionnaires used at the time of the original assessment will be reviewed and, to study the natural course of the syndrome, the same questionnaires will be sent to the participants by mail.

Official Title
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Idiopathic Hypersomnia - a Retrospective Characterization Study

Conditions
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Hypersomnia, Idiopathic

Intervention / Treatment
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* Other: Polysomnography


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Idiopathic hypersomnia, according to the The International Classification of Sleep Disorders - Third Edition (ICSD-3) Exclusion Criteria: Other serious somatic or psychiatric disease Drug additction with drug seeking behaviour

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 70 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Idiopathic hypersomnia<br>Observation | Other: Polysomnography<br>* Reviewing collected data<br>* Other names: Register data;|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Polysomnography | Spectral analyses | Baseline | 
| Multiple sleep latency test | Sleep latency and REM latency | Baseline | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Morbidity | Diagnoses | 1 week | 
| Sick leave | Percent | 1 week | 
| Pharmacotherapy | Type and dosage | 1 week | 
| Epworth Sleepiness Scale | Score on a scale with a total score of 0 to 24. Higher values means more severe problems. | Baseline | 
| Sleep Problem Acceptance Questionnaire | Score on a scale. An 8-item self-report questionnaire, total scores range from 0 to 48 points. Higher values equals higher level of acceptance and a positive outcome. | 1 week | 
| Insomnia Severity Index | Score on a scale. Seven items with a total score ranging from 0 to 28 points. Higher values means more severe insomnia, a negative outcome. | Baseline | 
| Montgomery Åsberg Depression Rating Scale | Score on a scale. Higher score indicates more severe depression, a negative outcome. The overall score ranges from 0 to 60. | Baseline | 
| Diurnal Type Questionnaire | Score on a scale. The overall score ranges 0 to 21, and higher scores equals more of a delayed sleep phase. | Baseline | 
| Munich Parasomnia Screening | Score on a scale. 21 items with an overall score ranging from 0 to 84. Higher scores indicates a negative outcome. | Baseline | 
| The Ullanlinna Narcolepsy Scale | Score on a scale. 11 item with a total score ranging 0-44. Higher total score equals a negative outcome. | Baseline |