Sleep matters: Impact of tuberous sclerosis and co-morbidities on children's sleep. A questionnaire-based study and review of current research

Background Sleep problems are common in children with neuropsychiatric symptoms and are a major source of morbidity both for children and their families. TS is a multisystem genetic disorder with prominent central nervous system involvement. Neurological and neuropsychiatric symptoms are common in TS putting this group of patients at high risk for sleep problems. Aims Describe sleep problems in children with tuberous sclerosis (TS), profile children most at risk, understand the interplay between the most common co-morbidities and sleep disturbance in TS and review the current knowledge for the impact of TS and co-morbidities on sleep. Method This study uses data from the TS2000 Study, a population based, longitudinal study of TS. One hundred and twenty-five children diagnosed with TS between 2001 and 2005 were ascertained and genetic testing undertaken. In 2014–2015, consenting participants (85) were assessed using a parent report questionnaire, including items enquiring after ASD diagnosis, epilepsy severity, ADHD diagnosis, tumour count and sleep, which included the Composite Sleep Diagnostic Interview (CSDI) questionnaire. Review We used PRISMA criteria to report our results. Preliminary findings – TS and sleep: sleep problems were reported by 63.3% of parents. The mean total CSDI score was 4.2±3.6. Main problems were: sleep latency (36.7%) and total sleep hours – co-morbidities and sleep: 95.7% of children with ASD had epilepsy, compared to 58.3% without ASD ( P =0.003). Patients with ASD showed significantly higher mean CSDI scores compared to children without ( P =0.009). ADHD data and tumour count need further analysis. Conclusion Children with TS have difficulties with reduced sleep hours and increased sleep latency. Comorbid ASD causes more difficulties.