Published findings showed that narcolepsy has a significant impact on social relationships in adolescents, thus suggesting that structured routine for assessing social health is a vital first step for treatment.
In a recently published exploratory study in the Journal of Clinical Sleep Medicine, findings revealed an overarching theme that adolescents and their parents experience difficulty in trying to balance narcolepsy symptom management with meaningful social engagement.1 Investigators concluded that newly diagnosed adolescents with narcolepsy should be referred to a mental health provider familiar with the challenges of the disease to screen them, offer recommendations, and emphasize the mental health resources available to them.
In the study, symptoms of daytime fatigue and cataplexy were the most significant and commonly discussed among adolescents and their parents as having an impact on social relationships. Notably, adolescents reported feeling frustrated by their sleep disorder impacting their social lives such as constantly needing to plan ahead with their sleep schedule. Additionally, both adolescents and their parents expressed the need for medical providers to better understand their changing priorities, validate social limitations, and offer more information around the social implications of condition and treatment.
“Almost every adolescent and parent in our study reported that the patient needed to constantly balance what was best for narcolepsy disorder symptom control versus what would be best for social relationships,” lead author Eric Zhou, PhD, assistant professor of pediatrics at Harvard Medical School, told NeurologyLive®.
Adolescents between the ages of 12 and 17 years old with narcolepsy and their parents completed a semistructured interview individually between July 2021 and December 2021. Participants were included if they had a confirmed diagnosis of narcolepsy type 1 (n = 12, 85.7%) or type 2 (n = 2, 14.3%) using polysomnography/Multiple Sleep Latency Test or other testing and were fluent in English. Data records were extracted, based on their narcolepsy medication plan and Epworth Sleepiness Scale score 3 months before the interview date, from Boston Children’s Hospital.Of note, 3 patients had a medical record from outside the hospital. Interview transcripts were analyzed using a multistage thematic analysis. Among the patients enrolled, 4 were women (28.6%), the majority were Hispanic White (n = 8; 57.1%) and most of the parent participants were the adolescents’ mothers (n = 13. 92.9%).
Zhou added that in the study, “Narcolepsy affected social relationships in 3 primary domains: mood, physical activities, and driving.” Adolescents reported feeling negative, annoyed easily, stressed out, and depressed, which were associated with their feelings of tiredness/fatigue because of the disorder. Most participants reported at least some level of limitation regarding their ability to engage the way they would like to in physical activities such as organized sports or nonorganized activities. As for driving, some participants were not of age yet; although, for the ones who were, these individuals raised the issue of their condition as an increased responsibility with friends in the car and not driving after 10:00pm.
Parents with satisfied/happy children in their social relationships emphasized the quality over quantity with their relationships, and noted having a few core ones, possibly including family. In comparison, parents who had unhappy children with their current relationships explained how their children had no close relationships or very few, as well as they felt unlikable, and wanted to have more or better friendships. Overall, the parents reported narcolepsy caused their children to miss out on social engagement opportunities.
Study limitations that warranted further research in adolescents with narcolepsy include that the researchers, in the context of this study, did not systematically collect the data based on symptom severity. In addition, the terms “fatigue” and “sleepiness” were often interchangeably used during the interviews by participants even though clinicians recognize those symptoms have different descriptions. The results may not be generalizable to other diverse populations as the majority were non-Hispanic White men with type 1 narcolepsy and most families were direct referrals from a sleep medicine physician.
“Health providers caring for adolescents with narcolepsy need to provide these patients with an open and respectful environment that invites and validates discussion and dialogue regarding their social relationship concerns. As with all adolescent patients with a chronic medical disorder, the profound social-developmental changes across this time span (eg, emergence of sexual preferences and orientation) need to be appreciated and incorporated into treatment recommendations,” Zhou said.
In a similar recent published study of 254 patients with narcolepsy between 18 and 39 years old, all participants reported that narcolepsy made their social life more challenging.2 Participants reported receiving more support from significant others, compared to family or friends (P <.05), and most (80%) indicated narcolepsy impacted their sex life. Few participants reported their providers questioned their social and sex lives, though they desired their providers to ask. Findings showed that not only does narcolepsy impact social relationships, but it also impacts sexual relationships in young adults, and suggests treatment should include supporting patients regarding the impact on social, romantic, and sexual health.