This article is more than 5 years old. Information may no longer be current.

Greater awareness, education needed in pediatric patients with excessive daytime sleepiness

Although narcolepsy typically begins in children and adolescents, they are most likely to experience a delay in diagnosis, suggesting that narcolepsy awareness efforts should be aimed at parents, pediatric clinical providers, schools and children themselves, according to recent findings.

“More than 50% of patients [with narcolepsy] report symptom onset before 18 years of age, but it is unknown if pediatric onset of symptoms contributes to delayed diagnosis,” Kiran Maski, MD, from Harvard Medical School and Boston Children’s Hospital, and colleagues wrote in Journal of Clinical Sleep Medicine. “Children/adolescents with narcolepsy may not be able to articulate disease symptoms as well as adults and are often reliant on external sources, such as parents and teachers, to note problematic sleepiness. Furthermore, pediatric patients with narcolepsy can have atypical forms of cataplexy ... making diagnosis more challenging.”

Researchers conducted a cross-sectional survey of 1,699 people in the United States with self-reported narcolepsy. They analyzed patient perspective on diagnostic delay, symptom burden, comorbidities associated with narcolepsy and general treatment efficacy. They also examined the effect of pediatric onset of narcolepsy symptoms on time to diagnosis and presence of depression.

The results showed that 1,193 of 1,451 respondents (82%) reported receiving a diagnosis of narcolepsy 1 year or more after symptom onset; the strongest predictor of this delayed diagnosis was pediatric onset of symptoms (OR = 2.4, P < .0005). Maski and colleagues found that although depression was the most common comorbidity among participants, it had no association with pediatric onset of symptoms. When asked how their condition changed over time, almost 68% of participants reported their condition was about the same since diagnosis. The rates of self-reported depression and anxiety were 24.4% and 17.7%, respectively.

The most frequently symptoms among patients with cataplexy were residual daytime sleepiness and cognitive difficulties. Similarly, residual daytime sleepiness, general fatigue and cognitive difficulties were the most common symptoms among participants without cataplexy. Patients with cataplexy had higher frequencies of lifestyle limitations in domains of expressing emotion freely, driving, sleeping through the night, exercising and performing self-care compared with participants without cataplexy. Most participants also indicated that their narcolepsy symptoms hindered their work/school performance.

“This study highlights the importance of directing advocacy and educational efforts for narcolepsy awareness to parents/caretakers, clinical providers, schools, and children/adolescents themselves,” Maski and colleagues wrote. “We hope this study will prompt future research directions in understanding the longitudinal trajectory of narcolepsy symptoms and etiology of reported comorbidities including mood problems, fatigue and cognitive difficulties.” – by Savannah Demko

Disclosure: The researchers report no relevant financial disclosures.