Path to Diagnosis and Impact of Narcolepsy on Quality of Life: A Survey of People Living With Narcolepsy

Introduction: Research was undertaken to better understand the path to a narcolepsy diagnosis, common symptoms, and impact on work, social interactions, and mental health for people with narcolepsy.

Methods: In February 2022, an email invitation to an online, 27-question survey was sent to US members of MyNarcolepsyTeam, a social network of >10,100 members.

Results: 110 members completed the survey. 38% experienced symptoms before 16 years of age. Before diagnosis, common symptoms included excessive daytime sleepiness (EDS; 93%), fatigue (84%), sleep disturbance (72%), and cognitive/memory challenges (67%). 68% of those with narcolepsy type 1 (NT1) experienced cataplexy before diagnosis. Time to diagnosis was ≥10 years for 31%. 64% were initially misdiagnosed with conditions including depression (73%) or sleep apnea (36%). 74% of respondents with NT1 continued to experience cataplexy, with 46% experiencing an episode a few times per week. Common emotional triggers for cataplexy episodes included overtiredness (70%), anger (48%), being startled (46%), laughter (46%), fear (44%), excitement (38%), or crying (33%). 76% reported an extreme or very severe impact of narcolepsy on daily life. Narcolepsy often interfered with work (82%), social life (86%), everyday chores (85%), and exercise (85%), and limited career options (76%). Most respondents reported feelings of isolation (83%), depression (81%), anxiety (80%), and embarrassment (75%).

Conclusions: Respondents routinely experienced misdiagnosis or “missed” diagnosis. Quickly identifying narcolepsy as the root cause of EDS and sleep disturbances can lead to early, effective treatment. Understanding the full impact of narcolepsy can help clinicians provide a more holistic treatment approach.