‘Presenteeism’ Highlights the Hypersomnia Cognitive Burden

People with narcolepsy and idiopathic hypersomnia often make it to work—but cognitive symptoms can keep them from performing at their best, according to a new survey.

By Risa Kerslake, RN, BSN

Among patients with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH), cognitive impairment is a frequently reported symptom, but it has been historically underresearched and underrecognized.

The ASPIRE survey study examined the lived experiences of cognitive impairment in 366 adults with NT1, NT2, or IH. Cognitive function was assessed using the British Columbia Cognitive Complaints Inventory-Expanded Version, which includes six items covering concentration, memory, word-finding, thought expression, processing speed and problem-solving, scored from 0 to 18. Participants were categorized as having mild-to-severe cognitive impairment (score above 4) or no/minimal impairment (score of 4 or below).

According to the study, released at SLEEP 2026, 89% of participants met the threshold for mild-to-severe cognitive impairment. For those with mild-to-severe impairment, the majority reported concerns with work (95%), routine activities (94%) and relationships (81%). Compared to those with no/minimal impairment, participants with mild-to-severe impairment had significantly higher rates of work impairment (58% versus 25%) and activity impairment (65% versus 41%).

Work and activity impairment were measured using the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem and addressed work-related absenteeism and presenteeism, as well as overall activity impairment.

“Absenteeism is absence from work, including not waking up on time, being late, having to leave work early or missing work altogether because you don’t feel well. Work impairment is also made up of presenteeism, which is being at work, being present, but not being able to concentrate to be fully productive,” explains Michael Doane, PhD, the head of health economics and outcomes research at Alkermes, who helped lead the survey study.

Doane and his team discovered that work impairment in participants with NT1, NT2 or IH was largely driven by presenteeism. In other words, their conditions weren’t preventing them from going to work, but they struggled to be fully present at work, experiencing issues like poor concentration.

“These symptoms have a large impact on patients’ lives—work impairment—but also on functional outcomes and quality of relationships, whether that’s with friends, family members, or romantic partners,” explains Doane.

Many of the participants had been prescribed stimulant or nonstimulant wake-promoting agents at the time of the survey, suggesting that many medications currently used to treat hypersomnia disorders may not adequately address cognitive symptoms.

To better care for patients with narcolepsy or IH, sleep clinicians need to take a holistic approach to treatment. “It’s thinking about the link between symptoms they may be experiencing and the broader implications this has for their everyday lives,” says Doane. Clinicians should be “on the lookout for what patients are describing, and relate that to the symptoms that are driving that impairment.”

Doane notes that ASPIRE data revealed a relationship between symptom severity and functional outcomes: as cognitive impairment worsened, work productivity and quality of life progressively declined. Meanwhile, participants with no or mild cognitive impairment showed scores comparable to individuals without narcolepsy or IH. “That speaks to the potential of getting patients to feel quite healthy if you can address these symptoms and make them less severe, where their scores may look similar to people without these conditions.”