Understanding Daytime and Nighttime Treatment Needs From the Patient’s Perspective: A Survey of People Living With Narcolepsy

Introduction: People with narcolepsy (PWN) were surveyed to better understand desired treatment outcomes and how they relate to common symptoms, treatment awareness, and medication usage.

Methods: In September 2022, a 47-question online survey was sent to US members of MyNarcolepsyTeam, a social network of >10,100 members.

Results: 97% of 109 total respondents reported negative impacts on daily life. The most troubling symptoms included excessive daytime sleepiness (90%), fatigue (84%), difficulty concentrating (72%), and memory problems (68%). Additionally, 81% experienced nighttime disruption, including poor quality sleep (67%), disrupted sleep (62%), insomnia (40%), or frequent awakenings (40%). Among those with narcolepsy type 1 (NT1), cataplexy was a top concern (64%). Top treatment goals included stopping daytime sleep (99%), improving productivity (96%), increasing energy (95%), improving memory/cognition (90%), and reducing cataplexy (71% among NT1 respondents). 85% reported a desire for improved sleep quality. However, only 45% indicated their doctor discussed narcolepsy’s impact on nighttime sleep, and only 44% reported discussions about treatments to improve nighttime sleep. Conversely, 80% reported discussions about treating daytime symptoms. Many sodium oxybate-naive patients relied on sleep aids such as melatonin or zolpidem, but only 34% reported satisfaction.

Conclusions: PWN experience and seek relief from a wide range of daytime and nighttime symptoms. However, clinician-patient discussions and treatments primarily focus on daytime symptoms, potentially leading patients to seek treatment options that may not improve their underlying condition. Understanding and discussing the experiences and needs of PWN throughout the 24-hour cycle can help clinicians support, educate, and treat patients holistically.