The burden of narcolepsy symptoms from patients' perspective: a narrative qualitative study

Narcolepsy is characterized by excessive daytime sleepiness (EDS) and, in type one, cataplexy, often accompanied by disrupted nocturnal sleep, parasomnias, and other impairments. This study aims to explore patients' perceptions and emotional experiences of these symptoms.

A qualitative study was conducted using narrative semi-structured interviews with 25 narcolepsy patients, guided by a structure approved by a multidisciplinary expert board. The interviews, conducted at the patients' homes or hospitals, were transcribed, inductively analyzed to develop a codebook, and subjected to thematic analysis.

The onset and manifestation were key themes for each symptom. EDS was often described as "microsleeps" or "shutting off," causing embarrassment when occurring publicly and influenced by factors such as the weather, seasons, or menstruation. Cataplexy was commonly triggered by positive emotions or situations, including sexual intercourse, with patients often suppressing emotions to prevent episodes, leading to misinterpretations by others as drunkenness. Nocturnal sleep disturbances, including vivid dreams, nightmares, sleep paralysis, and hallucinations, led to negative emotional experiences. Overall, narcolepsy symptoms significantly impacted patients' emotional well-being.

The burden of narcolepsy is deeply tied to patients' perceptions and emotional experiences, significantly affecting their quality of life, yet few studies have used qualitative approaches to explore their perspectives.