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Early onset intractable epilepsy and severe developmental delays are prominent symptoms of CDD. Comorbid sleep disturbances are a major concerning symptom for families. We aimed to explore the relationship between insomnia, daytime sleepiness, sleep medications and quality of life in children with CDD. Caregivers of 129 children with CDD in the International CDKL5 Disorder Database completed the Quality\u2010of\u2010Life Inventory\u2010Disability (QI\u2010Disability) questionnaire and \u201cDisorders of Maintaining Sleep\u201d (DIMS) and the \u201cDisorders of Excessive Somnolence\u201d (DOES) items of the Sleep Disturbance Scale for Children. Adjusting for covariates, a unit increase in DOES score was associated with reduced quality of life total (coefficient \u22123.06, 95% confidence interval [CI] 1.35\u20137.80), physical health (coefficient \u22127.20, 95% CI \u221210.64, \u22123.76) and negative emotions (coefficient \u22123.90, 95% CI \u22127.38, \u22120.42) scores. Adjusting for covariates, a unit increase in DIMS score was associated with reduced negative emotions (coefficient \u22126.02, 95% CI \u221210.18, \u22122.86). Use of sleep medications had small influences on the effect sizes. This study highlights the importance of sleep problems as a determinant of quality of life in children with CDD, consistent with effects observed for other groups of children with intellectual disability. Excessive daytime sleepiness was particularly associated with detrimental effects on quality of life. Further research in optimal behavioural and pharmaceutical management of sleep problems for this population is required.<\/jats:p>","DOI":"10.1111\/jsr.13600","type":"journal-article","created":{"date-parts":[[2022,4,13]],"date-time":"2022-04-13T06:42:26Z","timestamp":1649832146000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["Negative impact of insomnia and daytime sleepiness on quality of life in individuals with the cyclin\u2010dependent kinase\u2010like 5 deficiency disorder"],"prefix":"10.1111","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7358-9037","authenticated-orcid":false,"given":"Jenny","family":"Downs","sequence":"first","affiliation":[{"name":"Telethon Kids Institute, Centre for Child Health Research The University of Western Australia  Perth Australia"},{"name":"Curtin School of Allied Health Curtin University  Perth Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter","family":"Jacoby","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute, Centre for Child Health Research The University of Western Australia  Perth Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jacinta","family":"Saldaris","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute, Centre for Child Health Research The University of Western Australia  Perth Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helen","family":"Leonard","sequence":"additional","affiliation":[{"name":"Telethon Kids Institute, Centre for Child Health Research The University of Western Australia  Perth Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tim","family":"Benke","sequence":"additional","affiliation":[{"name":"Children's Hospital Colorado, Paediatric Neurology University of Colorado School of Medicine  Aurora Colorado USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eric","family":"Marsh","sequence":"additional","affiliation":[{"name":"Division of Neurology, Children's Hospital of Philadelphia, School of Medicine University of Pennsylvania  Philadelphia Pennsylvania USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Scott","family":"Demarest","sequence":"additional","affiliation":[{"name":"Children's Hospital Colorado, Paediatric Neurology University of Colorado School of Medicine  Aurora Colorado USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2022,4,12]]},"reference":[{"key":"e_1_2_10_2_1","unstructured":"Allison P. 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