Defining the Burden of Idiopathic Hypersomnia

By Patrick Daly - Last Updated: August 9, 2023

According to researchers led by Joanne Stevens, the impact of idiopathic hypersomnia on patients’ quality of life (QOL) and functioning has not been characterized, despite the presence of highly burdensome symptoms such as excessive daytime sleepiness and prolonged sleep. Stevens and colleagues conducted the Real World Idiopathic Hypersomnia Outcomes Study (ARISE) to investigate several QOL factors in patients with idiopathic hypersomnia.

Based on their real-world data, the study’s authors concluded idiopathic hypersomnia could be associated with significantly impaired QOL, functioning, cognition, mood, relationships, and work productivity, despite the use of wakefulness-promoting agents. Participants also reported feeling highly stigmatized due to idiopathic hypersomnia, according to their mean Quality of Life in Neurological Disorders (Neuro-QoL) Stigma scores compared with a reference population.

Functioning and QOL Still Lacking in Idiopathic Hypersomnia Treatment

The virtual cross-sectional survey study, published in Nature and Science of Sleep, enrolled 75 patients (81.3% female) with a mean age of 34.1 ± 10.7 years. Authors also compared patient subgroups with or without long sleep times, defined as ≥11 hours of sleep in 24 hours.

Surveys included the Functional Outcomes of Sleep Questionnaire, short version (FOSQ-10); Neuro-QoL Social Roles and Stigma domains; British Columbia Cognitive Complaints Inventory (BC-CCI); Patient Health Questionnaire (PHQ-9); and the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP).

Among the ARISE participants, the mean score for the FOSQ-10 was 10.7 ± 2.8. For the Neuro-QoL Social Roles and Stigma domains, the mean scores were 43.4 ± 4.2 and 57.3 ± 5.9, respectively. The authors qualified that these scores reflected impaired daily functioning and QOL. Additionally, 62.7% of patients reported moderate-to-severe cognitive complaints on the BC-CCI, and 66.7% reported moderate-to-severe depressive symptoms on the PHQ-9.

Furthermore, based on the WPAI:SHP mean percent scores, idiopathic hypersomnia was associated with substantially impaired absenteeism (12.3 ± 23.6), presenteeism (47.6 ± 22.7), overall work productivity (51.4 ± 24.7), and overall regular daily activity (64.0 ± 21.9). Authors noted these impacts were observed in patients with or without long sleep time.

“These results indicate that measures of functional impairments are important to include in effectiveness trials for idiopathic hypersomnia treatments, and [they] provide a baseline against which treatment effectiveness may be evaluated,” Stevens concluded.

Related: Sex-Specific Risks of Daytime Sleepiness in Obstructive Sleep Apnea

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