Sleep problems and associated comorbidities among adults with Down syndrome

American Journal on Intellectual and Developmental Disabilities

Hooper

Fidler

et al. 2017

120

176

Increasingly individuals with intellectual and developmental disabilities, including Down syndrome, are being targeted for clinical trials. However, a challenge exists in effectively evaluating the outcomes of these new pharmacological interventions. Few empirically evaluated, psychometrically sound outcome measures appropriate for use in clinical trials with individuals with Down syndrome have been identified. To address this challenge, the NIH assembled leading clinicians and scientists to review existing measures and identify those that currently are appropriate for trials; those that may be appropriate after expansion of age range addition of easier items, and/or downward extension of psychometric norms; and areas where new measures need to be developed. This paper focuses on measures in the areas of cognition and behavior.

Section: Resultsmentioning

confidence: 99%

Outcome Measures for Clinical Trials in Down Syndrome

American Journal on Intellectual and Developmental Disabilities

Hooper

Fidler

et al. 2017

120

176

“…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 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).…”

Section: Introductionmentioning

confidence: 99%

Sleep in Neurodevelopmental Disorders

International Review of Research in Developmental Disabilities

Schwichtenberg

2016

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.

“…Children with Down syndrome (DS) are at risk for a variety of sleep problems. Obstructive sleep apnoea affects 31–66% of individuals with DS (Marcus et al ; Stebbens et al ; de Miguel‐Diez et al ; Maris et al ), and behavioural sleep disturbances, such as delayed sleep onset, night‐time awakenings and early morning awakenings, affect 52–69% of children with DS, and a potentially greater range (13–86%) of adults with DS (Epstein et al ; Stores & Stores ; Carter et al ; Rosen et al ; Churchill et al ; Esbensen ). The rates of these sleep problems are higher than that observed in typically developing children, but still demonstrate significant variability between studies.…”

mentioning

confidence: 99%

Reliability of parent report measures of sleep in children with Down syndrome

J intellect Disabil Res

Hoffman

2016

Self Cite

Background Behavioural sleep disturbances are common among children with Down syndrome (DS). However, tools used to detect and evaluate behavioural sleep disturbances were developed for typically developing children and have not been evaluated for use among children with DS. The current study evaluates the psychometric properties of three measures of behavioural sleep disturbances that are currently being used with children with intellectual and developmental disabilities, including children with DS. Method Caregivers of 30 children with DS rated their child’s sleep with the Behavioral Evaluation of Disorders of Sleep (BEDS), Children’s Sleep Habits Questionnaire (CSHQ) and Sleep Disturbances Scale for Children (SDSC). Caregivers also provided information on sleep diagnoses and completed a 7-night sleep and behaviour diary. Results The study investigated the rate of detecting sleep problems, internal consistency, and convergent and concurrent validity of the BEDS, CSHQ and SDSC. Children with DS were reported to exhibit behavioural sleep disturbances at different rates depending on the measure used; 0% BEDS, 79.3% CSHQ, and 17.2% SDSC. Internal consistency was comparable for all three measures for their total scores. However, when evaluating the internal consistency of subscale scores, those on the CSHQ and SDSC performed more strongly. The subscales of the CSHQ performed best when evaluating convergent and concurrent validity, with the SDSC subscales performing moderately well. Conclusion The study findings suggest that, among children with DS, the CSHQ and its subscales performed in a psychometrically sound and theoretically appropriate manner in relation to other measures of sleep, medical history of sleep problems, and daily reports of sleep and associated behaviours. The SDSC performed moderately well. When evaluating behavioural sleep disturbances among children with DS, the CSHQ is recommended based on its stronger psychometric properties.