The impact of narcolepsy and idiopathic hypersomnia on work-related outcomes: a systematic literature review

Abstract The symptoms experienced by people with narcolepsy and idiopathic hypersomnia (IH) have profound effects on individuals’ lives, affecting daily functioning, relationships and mental health, and can impair performance at work or school. Although numerous studies have evaluated the impact of narcolepsy and IH on work-related outcomes, the evidence base is highly fragmented and difficult to meaningfully summarize. We conducted a systematic literature review of published evidence to better understand the impact of these disorders on employment, work productivity, work satisfaction, and related outcomes. We identified 54 publications representing 51 unique studies that met the study inclusion criteria and were included in the review. Although most people with narcolepsy or IH were employed, fewer were in paid work than control populations, and absenteeism and presenteeism were high. Having narcolepsy and IH resulted in lower wages and missed work time, leading to unfavorable impacts on career progression, promotion, job satisfaction, and income. The most frequently reported work-related problems were sleepiness at work, reduced performance, work accidents, and lateness. More severe excessive daytime sleepiness was associated with greater work impairment. Narcolepsy-specific medications that improved excessive daytime sleepiness were reported to improve work productivity in clinical trials; however, many people are left with substantial residual impairment despite treatment. These findings indicate that narcolepsy and IH impose a substantial burden on work functioning and employment, and there is a need for more research to inform interventions and policies aimed at mitigating the impact of these debilitating conditions on individuals’ professional lives.