What Physical, Psychological Factors Warrant Consideration in Narcolepsy Management?

Current strategies of managing narcolepsy include a combination of lifestyle modifications and medications that promote wakefulness and suppress cataplexy.

Although these medications are effective in improving daytime functioning, researchers of a review published in Nature and Science of Sleep note that patients with narcolepsy often experience adverse effects or a lack of treatment efficacy that can contribute to suboptimal management of symptoms and in most cases significant residual impairment.

Researchers sought to outline current and prospective pharmacological therapies for treating both excessive daytime sleepiness (EDS) and cataplexy. Additionally, researchers discussed the negative impact of health-related stigma and subsequent efforts to address these often neglected symptoms.

There have been several novel therapies recently approved for treatment of narcolepsy, including solriamfetol and pitolisant, as well as the expanded indication of sodium oxybate among children. Moreover, the FDA’s recent approval of Jazz Pharmaceuticals’ Xywav will also mark a notable breakthrough in treatment of EDS and cataplexy, as it will provide a low-sodium alternative to sodium oxybate.

When it comes to managing the condition, researchers highlight that “symptoms have been shown to have significant impact on not only the physical but also the mental and social health of persons with narcolepsy.” As opposed to the physical implications of the disease, mental and social issues have just begun to be examined in 2015 as a potential underlying mechanism affecting those with the condition.

In prior research, it has been well established that narcolepsy significantly impacts health-related quality of life and psychosocial wellbeing, with social isolation and a lack of public understanding cited as noteworthy factors.

In fact, researchers note that this lack of societal understanding and acceptance was voiced at the FDA’s narcolepsy meeting in 2013 with patients and loved ones of those with narcolepsy expressing the need for more educational services in schools, workplaces, and other social and professional settings. Expanding education on narcolepsy can assist in reducing the restrictions that people with narcolepsy face in professional and educational settings, such as the stigmas of being lazy, careless, and antisocial that may be associated with the condition.

In addition to promoting enhanced public education to address these societal stigmas, training those with narcolepsy on how to optimally explain their story via speaking or writing has also generated extensive benefits. Project Sleep, created by the Rising Voices of Narcolepsy program, has provided this training since 2017 with over 60 speakers and writers now affiliated.

“In the last decade, the experiences of people with narcolepsy are playing a more prominent role in management of this condition….the acknowledgement of health-related stigma associated with narcolepsy and efforts to reduce the impact of this bias are allowing individuals with narcolepsy to enjoy a better quality of life,” concluded the study authors.

Reference

Barker EC, Flygare J, Paruthi S, et al. Living with narcolepsy: current management strategies, future prospects, and overlooked real-life concerns. Nat Sci Sleep. Published online July 16, 2020. doi:10.2147/NSS.S162762