Longitudinal change in sleep, functional, and behavioural characteristics in a cohort of children with Down syndrome

Summary This paper describes the longitudinal change in sleep, functional, and behavioural characteristics in a cohort of children with Down syndrome, including the effect of sleep interventions in a subset. A prospective longitudinal cohort study was undertaken in children with Down syndrome aged 3–16 years comparing (1) children referred to a tertiary sleep medicine clinic who received sleep hygiene advice and an additional sleep treatment (DSref_I) with (2) children attending the same clinic who only received sleep hygiene advice (DSref_N) and (3) children recruited from the community who, were not receiving any treatment (DScomm). Data collected included demographic and medical history information, Child Sleep Habits Questionnaire‐Abbreviated (CSHQ‐A), Life‐Habits Questionnaire (Life‐H) and Child Behaviour Checklist (CBCL) at baseline and then 6‐monthly for a total of 18 months. Any sleep interventions during this time were recorded. A total of 57 children were included (DSref_I, n = 16; DSref_N, n = 25; DScomm, n = 16). At recruitment, the median CSHQ‐A total score was high (>41) in all three subgroups, but highest in the DSref_I subgroup (median [interquartile range] Dsref_I score 58 [53–66] versus DSref_N score 49 [43–53], p = 0.019). Although improved, 80% of participants in the DSref_I subgroup still had a CSHQ‐A total score >41 at the last assessment point. The median total Life‐H and total CBCL scores were not significantly different between groups at baseline and there was no significant time, group, or interaction effect seen through the study. Over an 18‐month period, sleep problems were seen to persist in children with Down syndrome. Treatment resulted in only modest improvements in sleep.