Idiopathic Hypersomnia Demonstrates Moderate to Severe Impact on Quality of Life, Patient-Reported Outcomes
Despite a low percentage of patients missing work time due to their condition, a higher percentage reported impairment while working, overall work impairment, and activity impairment.
Logan Schneider, MD
Real-world results from the ARISE study showed that idiopathic hypersomnia (IH), an uncommon sleep disorder that causes excessive daytime sleepiness, is associated with a moderate to severe effect on quality of life (QoL), as demonstrated by responses on patient-reported outcomes.
After completing a virtual survey, the cohort of 75 participants with IH demonstrated mean Neuro-QoL scores of 24.9 (±6.2) on social functioning and 19.9 (±6.3) on stigma domains. General and clinical reference scores on Neuro-QoL were 50.4 (±9.6) and 49.7 (±9.5), respectively.
To assess real-world QoL and functional impairment in this patient population, lead investigator Logan Schneider, MD, consultant neurologist, Stanford/VA Alzheimer’s Center, and colleagues included assessments such as Functional Outcomes of Sleep Questionnaire-10 (FOSQ-10), Work Productivity and Impairment: Specific Health Problem (WPAI:SHP) questionnaire, British Columbia Cognitive Complaints Inventory (BC-CCI), and Patient Health Questionnaire (PHQ-9).
Presented at the 2022 American Academy of Neurology (AAN) Annual Meeting, April 2-7, in Seattle, Washington, the cohort was mostly female (81.3%), with the highest proportion of patients disease duration being 2 to 4 years since their diagnosis (45.3%). The mean age of the sample was 34.1 years (±10.7), with patients experiencing a mean 24-hour sleep duration of 11.6 hours (±3.4).
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In addition to effects on Neuro-QoL scores, patients demonstrated mean FOSQ-10 scores of 10.7 (±2.8) compared with a previously reported normal control value of 17.8 (±3.1). When the WPAI:SHP was modified with IH as the SHP, mean scores indicated a low percent of work time missed because of patients’ condition (absenteeism, 12.3% [±23.6]), but a higher percentage of patients working while impaired (presenteeism, 47.6% [±22.7]). Additionally, mean scores showed a higher percent of overall work impairment, defined as absenteeism plus presenteeism (51.4% [±24.7]), and activity impairment due to IH (64.0% [±21.9].
Mean BC-CCI and PHQ-9 scores were 10.8 (±4.8). and 12.3 (±5.4), respectively, with 62.7% and 66.7% of participants scoring in the moderate to severe range on the BC-CCI and PHQ-9, respectively. In total, 44% of patients reported psychiatric comorbidities, most of which were anxiety disorders (34.7%).
A chronic neurologic disorder, the cause of IH is presently unknown, although a genetic predisposition is suggested by the strong family history of similar symptoms. In August 2021, the FDA made a landmark decision in approving JZP-258 (Xywav; Jazz Pharmaceuticals) as the first treatment for this indication.2 Made up of a formulation of calcium, magnesium, potassium, and sodium oxybates, JZP-258 was originally approved for the treatment of cataplexy in patients 7 years of age or older with narcolepsy, in July 2020.
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