Psychosocial Characteristics of Children with Central Disorders of Hypersomnolence Versus Matched Healthy Children

Abstract

Background: Hypersomnia of central origin from narcolepsy or idiopathic hypersomnia (IHS) is characterized by pathological levels of excessive daytime sleepiness (EDS). Central hypersomnia has historically been underdiagnosed and poorly understood, especially with respect to its impact on daytime functioning and quality of life in children. Objective: Describe the psychosocial adjustment of children treated for narcolepsy or IHS on school performance, quality of life, and physical/extracurricular activities. Methods: Using a matched case control design, we compared child self-and parent-reported data from thirtythree 8-to 16-year-olds with an established diagnosis of narcolepsy or IHS, according to ICSD-2 criteria, to that of 33 healthy children matched by age, race/ethnicity, gender, and household income. Assessments evaluated academic performance, quality of life and wellness, sleepiness, and participation in extracurricular activities. Results: Compared to healthy controls, children with central hypersomnia had poorer daytime functioning in multiple domains. Children with hypersomnia missed more days of school and had lower grades than healthy controls. Children with hypersomnia had poorer quality of life by both parent and child report. Children with hypersomnia were signifi cantly sleepier, had higher BMI, and were more likely to report a history of recent injury. Finally, children with hypersomnia engaged in fewer after-school activities than healthy controls. Conclusions: A range of signifi cant psychosocial consequences are reported in children with hypersomnia even after a diagnosis has been made and treatments initiated. Health care professionals should be mindful of the psychosocial problems that may present in children with hypersomnia over the course of treatment. Keywords: children, daytime sleepiness, hypersomnolence, daytime functioning Citation: Avis KT, Shen J, Weaver P, Schwebel DC. Psychosocial characteristics of children with central disorders of hypersomnolence versus matched healthy children.

Idiopathic Hypersomnia

“…Quality of life and daytime functioning can be profoundly affected in patients with IH, even following treatment (50–52). Although the distinction between IH with mood dysfunction and hypersomnia associated with a psychiatric disorder can be challenging (41), symptoms of depression are commonly encountered in people with IH and may add to the burden of disease (52).…”

Associations Between Neuropsychological, Neurobehavioral and Emotional Functioning and Either Narcolepsy or Idiopathic Hypersomnia in Children and Adolescents

“…The Avis et al 28 study included children with a variety of central disorders of hypersomnolence: narcolepsy with cataplexy (n = 7), narcolepsy without cataplexy (n = 11), idiopathic hypersomnia (n = 15), and 33 healthy controls. It found that all children with a central disorder of hypersomnolence scored significantly lower on academic grades with a Cohen effect size value suggesting a moderate practical significance.…”

The Learning Implications for Children and Adolescents with Hypersomnolence

“…The interviews yielded descriptions of the impact such as: "deterioration in school performance", or "decrease in academic performance", or "school functioning is identified as significantly lower" following the onset of narcolepsy. Because only one study had included a population of children with idiopathic hypersomnolence (n = 15), no generalisations can be drawn for that population, however, this study did identify that all children with central hypersomnia had lower academic grades, and were significantly sleepier than healthy Chapter Four: Published Literature Review -Associations between neuropsychological, neurobehavioural and emotional functioning and either narcolepsy or idiopathic hypersomnia in children and adolescents 78 children (Avis, Shen, et al, 2015). The proportion of children and adolescents with narcolepsy who had repeated a year was also significantly higher than that of the general population.…”

“…The Avis, Shen, et al (2015) study included children with a variety of central disorders of hypersomnolence: narcolepsy with cataplexy (n = 7), narcolepsy without cataplexy (n = 11), idiopathic hypersomnia (n = 15), and 33 healthy controls. It found that all children with a central disorder of hypersomnolence scored significantly lower on academic grades with a Cohen's effect size value suggesting a moderate practical significance.…”

“…All nine studies in the Ludwig et al (2018) review found academic grades were impacted, with eight of the nine relying primarily on observational data provided through parent reports and questionnaires, information from teachers, or standardised checklists. Only one study included a population of children with idiopathic hypersomnia (n = 15) (Avis, Shen, et al, 2015). The observational data has enabled general group differences to be identified, however individual impacts cannot be quantified through non-standardised processes.…”