Introduction Idiopathic Hypersomnolence (IHS) is a chronic neurological condition marked by an insatiable need to sleep, not eased by a night’s slumber.1 It’s a diagnosis of exclusion and patients will have had cerebrospinal fluid hypocretin levels measured to rule out narcolepsy. It is a difficult condition to manage, requiring optimal multidisciplinary team input.
The service evaluation will identify patients from 2012–2022 in the sleep service with a diagnosis of IHS to see if they have been managed appropriately in the view of standardising and improving future care.
Methodology Patient diagnosis and management data was collected retrospectively from sleep study results and electronic patient records. All patients with a diagnosis of IHS or idiopathic hypersomnia in the past 10 years were included.
Results From 2012–2022, 12 patients were found to have intermediate hypocretin levels (>110 but <200pg/mL). Sex ratio 5:1 (M:F) and mean age 9.1 years at referral.
Only 50% had a full set of sleep studies, including Full Polysomnogram (PSG), Multiple Sleep Latency Test (MSLT) and actigraphy (figure 1). Data showed none of the patients had the complete list of blood tests recommended (including Haemoglobin, Ferritin, Vitamin D and Thyroid Function).
Study limitations include retrospective analysis, small numbers, and the fact that investigations may have been performed elsewhere prior to referral.
Discussion This study highlighted that the clinical pathway needs refining to ensure children with IHS are correctly investigated to rule out other causes of excessive sleepiness and improve subsequent management. This may decrease the amount of unnecessary invasive investigations.
Recommendations include integrating clear cut clinical pathways incorporating all 3 sleep studies and blood tests to ensure optimal management will be a suggestion locally from the project.
Anon. About Idiopathic Hypersomnia [online]. Hypersomnia Foundation. Revised Feb 2022. [Accessed 08/09/2022]. https://www.hypersomniafoundation.org/ih/
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