Life Effects of Narcolepsy in 180 Patients from North America, Asia and Europe Compared to Matched Controls

Broughton, Roger; Ghanem, Quais; Hishikawa, Yasuo; Sugita, Yoshiro; Nevšímalová, Soňa; Roth, Bedřich · 1981 · OpenAlex-citations

DOI: 10.1017/s0317167100043419

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Summary

This study investigates the socio-economic and daily life impacts of narcolepsy, addressing a gap in literature that had previously focused on clinical symptoms rather than their functional consequences. The research aimed to quantify how primary symptoms—excessive daytime sleepiness, sleep attacks, cataplexy, and REM-related phenomena—and secondary symptoms like visual disturbances and memory impairment affect patients' occupational, educational, and personal lives. The researchers conducted an international questionnaire survey involving 180 narcolepsy patients and 180 age- and sex-matched controls, evenly distributed across North American, Asian, and European populations. The narcolepsy cohort consisted of individuals diagnosed with excessive daytime sleepiness or sleep attacks, plus at least one auxiliary symptom such as cataplexy or sleep paralysis. Data were collected using detailed questionnaires covering work, education, driving, accidents, recreation, personality, and interpersonal relationships. Statistical comparisons between the groups were performed using a conservative significance level of p<.002 to account for multiple comparisons. The results demonstrated that narcolepsy has severe deleterious effects on daily functioning. Occupational problems were prevalent in over 75% of patients, with significant reductions in performance, earning capacity, and promotion opportunities compared to controls. Job dismissal occurred in 21.1% of patients versus 0% of controls. Driving was heavily impacted: 66.5% of patients fell asleep while driving, and 36.8% experienced accidents attributed to the condition, compared to 5.3% of controls. Household and occupational accidents were also significantly higher in patients (48.9% vs. 1.8%). Educational attainment showed no significant difference in completion rates, though patients reported more interpersonal problems with teachers and embarrassment. Personality changes were reported by 48.3% of patients, including recurrent depression (51.1%) and suicidal thoughts (24.6%), which were significantly higher than in controls. Additionally, patients reported high rates of visual symptoms, such as diplopia and eye fatigue, and memory deficits, particularly regarding recent events. The study concludes that narcolepsy produces a variety of life effects that are more serious and pervasive than those associated with conditions like epilepsy. The high incidence of driving accidents, occupational disability, and psychological distress underscores the profound socio-economic burden of the disease. The authors emphasize that these findings highlight the critical importance of early diagnosis and effective treatment to mitigate the dangerous and disabling consequences of narcolepsy on patients' lives.

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