Exploring sleep challenges in CDKL5 Deficiency Disorder
Abstract
BACKGROUND: Sleep disturbance is a common and significant issue for individuals with CDKL5 Deficiency Disorder (CDD) and their families. The study aimed to investigate experiences of sleep disturbance in CDD and associated factors. METHODS: Data were sourced from the baseline and follow-up questionnaires completed by caregivers of 258 individuals in the International CDKL5 Disorder Database. Outcome variables were scaled scores for selected domains of the Sleep Disturbance Scale for Children: Disorders of Maintaining Sleep (DIMS), Disorders of Excessive Somnolence (DOES), Sleep Breathing Disorders (SBD), and Sleep-Wake Transition Disorders (SWTD). For DIMS and SBD, t scores were calculated and dichotomised into high (≥ 70) and low (< 70) groups. Through univariable and multivariable Poisson and logistic regression analyses, the relationships between the sleep disturbance domains and covariates, including sex, age group, genetic variant, motor skills, seizure frequency and patterns, medication use and side effects, constipation, and emotional behaviours, were examined. Caregivers also provided qualitative data on their children’s sleep abnormalities. Content analysis assessed caregivers’ responses to the prompt, “Is there anything about your child’s sleeping that you consider unusual or problematic?”. RESULTS: Individuals ≥18 years old had an adjusted mean DIMS scaled score 6.49 (95% CI -12.44,-0.55) points lower than those aged 3–5 years. Daily seizures were associated with…
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