Connecting clinicians and patients: The language of narcolepsy

Abstract

Narcolepsy is a rare lifelong sleep disorder characterized by excessive daytime sleepiness with variable expression of cataplexy, sleep paralysis, sleep-related hallucinations and disrupted nocturnal sleep. Affected individuals also experience additional impairing symptoms, including (but not limited to) difficulties with attention, memory and concentration, brain fog, mood instability and fatigue, with a substantial impact on everyday life. Diagnostic delays of up to 10 years are common, primarily due to the substantial heterogeneity in clinical presentation of narcolepsy symptoms and presence of significant comorbidities. The disconnect in language used by clinicians and patients could be a factor contributing to diagnostic delays, but it has not been much studied. We followed a two-part approach to investigate the impact of this possible mismatch in language use. Firstly, a comprehensive literature search was conducted to identify publications reporting discrepancies in language relating to narcolepsy symptoms used by clinicians and patients. As a gap in the literature was anticipated, we supplemented the search results with practical strategies based on our clinical experience to facilitate dialog between clinicians and people living with narcolepsy, as well as proposing future research ideas. The findings of the narrative review, complemented by expert clinical opinion, are intended to help clinicians recognize narcolepsy symptoms and to refer patients with suspected narcolepsy, when appropriate. Although it is unknown to what extent a disconnect in language may contribute to diagnostic delays, we hope that better recognition of the varied clinical presentations of narcolepsy will lead to timelier diagnosis and help improve patient outcomes.