Chapter Five - Sleep in Neurodevelopmental Disorders

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Abstract

Individuals with intellectual and developmental disabilities (IDD) experience sleep problems at higher rates than the general population. Although individuals with IDD are a heterogeneous group, several sleep problems cluster within genetic syndromes or disorders. This review summarizes the prevalence of sleep problems experienced by individuals with Angelman syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome, Down syndrome, fragile X syndrome, Prader–Willi syndrome, Smith–Magenis syndrome, Williams syndrome, autism spectrum disorder, and idiopathic IDD. Factors associated with sleep problems and the evidence for sleep treatments are reviewed for each neurodevelopmental disorder. Sleep research advancements in neurodevelopmental disorders are reviewed, including the need for consistency in defining and measuring sleep problems, considerations for research design and reporting of results, and considerations when evaluating sleep treatments.

Introduction

Individuals with intellectual and developmental disabilities (IDD) experience sleep problems at higher rates than the general population. Prevalence estimates vary with estimates of reported sleep problems ranging from 34% to 86% (Bartlett et al., 1985, Clements et al., 1986). Although the nature of sleep problems in individuals with IDD has been a focus of research for several decades, less research has been focused on treatment options and often assessed individuals with IDD as a homogenous group with little distinction for developmental changes with age. Several literature reviews in the last decade have drawn attention to sleep problems in specific genetic syndromes or disorders, specific age groups, or targeting issues with assessment and treatment (Churchill et al., 2012, Didden and Sigafoos, 2001, Doran et al., 2006, Richdale and Baker, 2014, Tietze et al., 2012, van de Wouw et al., 2012). Given the prevalence of sleep problems in individuals with IDD, there is growing need to understand the types of sleep problems experienced by this heterogeneous group of individuals with IDD, how measurement of sleep problems impacts findings, and implications for appropriate treatment of sleep problems among individuals with IDD across the life span.

Several studies have compared sleep problems across syndrome groups in an effort to better characterize associated behavioral phenotypes and areas of concern specific to genetic syndromes (Ashworth et al., 2013, Cotton and Richdale, 2006, 2010). These efforts are helpful in identifying potential neurobiological or craniofacial contributions to sleep problems. For example, facial and physical features may contribute to an increased risk for obstructive sleep apnea (OSA) in individuals with Down syndrome (DS) and circadian timing may be altered in individuals with autism spectrum disorder (ASD) (Esbensen, 2016, Glickman, 2010). Additionally, previous studies highlight circadian rhythm problems in some children with Smith–Magenis syndrome (SMS) reporting higher endogenous melatonin levels during the day than at night (De Leersnyder et al., 2001, Potocki et al., 2000). However, the research rigor in studies of sleep problems in individuals with IDD or specific genetic syndromes varies from (1) limited to case series, cohort studies, (2) well-conducted cohort studies or case control, and (3) few high-quality systematic reviews or cohort studies (van de Wouw et al., 2012). Sleep research in individuals with IDD is further hindered by diverse sleep assessment methods, small sample sizes, and heterogeneous groups with respect to disorders and age. This variability impacts the ability to draw conclusions about sleep problems in specific populations and the ability to effectively evaluate sleep treatment efficacy.

This review focuses on common sleep problems among individuals with different genetic syndromes or disorders, in an effort to identify research gaps and methods for improving research replicability and ultimately the sleep of individuals with IDD. Rather than compare the rates of problems across syndromes, we elected to focus on the specific sleep problems experienced within syndromes/disorders. The intention is to highlight sleep problems and commonalities within syndrome to better identify research gaps and inform sleep evaluation and treatment. The following sections will review sleep problems types and sleep assessment methods, review research targeted to specific syndromes and disorders, and identify areas for future research.

Section snippets

Common Sleep Problems

Prior to reviewing specific sleep problems experienced by individuals with IDD, a review of common sleep problems and their definitions is warranted. Prior classification systems for sleep disorders varied, contributing to the use of different terms to describe sleep problems in the research literature. Recent revisions to the International Classification of Sleep Disorders (ICSD-3) and Diagnostic and Statistical Manual of Mental Disorders (DSM-5) provide for more consistent definitions of

Measurement

In addition to the heterogeneous set of sleep problems that are common concerns in individuals with IDD, there exists heterogeneity in the methods used to measure sleep behaviors and problems in individuals with IDD, which complicates the extraction of knowledge for these specialized populations. Different methods for assessing sleep were recently reviewed in relation to children with ASD (Hodge, Parnell, Hoffman, & Sweeney, 2012). Readers are encouraged to consult Hodge et al. (2012) for a

Prevalence

Among children with Angelman syndrome (AS), sleep problems have been reported among 20–80% of individuals, with a more recent review citing rates of 48–70% (Tietze et al., 2012, Walz et al., 2005, Williams et al., 1995). In AS, sleep problems of specific concern include insomnia (sleep initiation and sleep maintenance), parasomnia, daytime sleepiness, and sleep-related breathing problems, with reported rates varying depending on how sleep was measured (Goldman, Bichell, et al., 2012). A study

Future Research

Sleep problems continue to be an area of concern for many individuals with IDD or specific genetic syndromes, with reported rates higher than those in the general population. The literature to date on individuals with IDD, various genetic syndromes or disorders has been able to replicate certain findings relating to associated sleep problems. However, different sleep measurement methodologies contributed to varied prevalence rates and patterns of associated problems. Further, suitable

Acknowledgments

This manuscript was prepared with support from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (R21 HD082307) and National Institute of Mental Health (R00 MH092431). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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