Published in Sleep Medicine, Volume 113, January 2024, Pages 313-327.

Abstract

There is increasing recognition of the high prevalence of sleep issues in children with Tourette syndrome (TS), a condition characterised by motor and vocal tics. Overnight polysomnography (PSG) has been the primary mode of sleep assessment in the TS literature, despite the extensive use of actigraphy in other neurodevelopmental populations. As a result, there are existing research gaps surrounding day-to-day variability of sleep in TS and links to daytime functioning. This study adopts a naturalistic, intensive longitudinal design to examine sleep in children with TS while considering potential links to tic severity and daytime functioning.

Participants were 34 children aged between 8 and 12 years (12 with TS, 22 neurotypical controls). Wrist actigraphs tracked sleep-wake cycles across two weeks and a battery of scales and cognitive assessments measured sleep disturbances and daytime functioning.

Mixed models using N = 476 nights of actigraphy data found that relative to controls, children with TS had significantly increased time in bed, increased sleep onset latency, reduced sleep efficiency, lower subjective sleep quality, but comparable actual sleep time. Higher self-report tic severity at bedtime did not predict increased sleep onset latency. In the sleep disturbance scale, 83.33 % of children with TS met the clinical cut-off for a sleep disorder. Parent-report emotional, behavioural, and executive difficulties were greater in the TS group relative to controls, but performance on cognitive tasks was comparable between groups.

Together, findings highlight sleep disturbances as an important clinical factor to consider in the management of TS, though further research is required to substantiate findings in larger-scale studies.

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Keenan, L., Bramham, J., Dinca, M., Coogan, A. N., & Downes, M. (2024). Sleep and daytime functioning in children with tourette syndrome: A two-week case-control study with actigraphy and cognitive assessments. Sleep Medicine, 113, 313-327.

Published in Developmental Neuropsychology Vol 49, 2024, January 2024, Pages 39-60.

Abstract

There is an increasing need to identify and treat sleep disturbances in Tourette syndrome (TS), a neurodevelopmental condition characterized by tics. This study explored sleep, tics, and executive functioning in children with TS (n=136) and neurotypical controls (n=101) through parent-report scales and open-ended questions. 85% of children with TS scored in the clinical range for a sleep disorder. Higher tic severity predicted increased sleep disturbances and executive difficulties. Qualitative insights indicated a bidirectional link between sleep and tics, which warrants consideration in clinical settings. Further research is needed to explore causal links.

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Keenan, L., Bramham, J., & Downes, M. (2024). Parent-Report Sleep Disturbances and Everyday Executive Functioning Difficulties in Children with Tourette Syndrome. Developmental Neuropsychology, 49(1), 39-60.

Published in Journal of Clinical Sleep Medicine, Vol 19, Issue 8, August 2023.

Abstract

Study Objectives: The aim of this mixed-methods study was to gain an insight through qualitative and quantitative means into the impact of the coronavirus disease 2019 (COVID-19) pandemic on children with and without Tourette syndrome (TS).

Methods: Parents/guardians of children and adolescents with TS (n = 95; mean age = 11.2 years, standard deviation = 2.68 years) and typically developing controls (n = 86; mean age = 10.7 years, standard deviation = 2.8 years) in the United Kingdom and Ireland completed an online questionnaire examining sleep, with open-ended questions pertaining to their perceived impact of COVID-19 on the sleep of their children. Nine items from the Sleep Disturbance Scale for Children were used to supplement qualitative data.

Results: A negative impact of the pandemic on the sleep of both groups was observed, including exacerbated tics, sleep deprivation, and anxiety, with particular disruption for children with TS. Parents of children with TS reported poorer sleep patterns than parents of typically developing children on the Sleep Disturbance Scale for Children. Analyses showed that group and age predicted 43.8% of variance in sleep duration: F (4, 176) = 34.2, P < .001.

Conclusions: Findings suggest that sleep patterns of children with TS may be more impacted by the pandemic than the average child. Given that there are generally more sleep issues reported in children with TS, further research is warranted in relation to the sleep health of children with TS in a post-pandemic era. By identifying sleep issues potentially persisting after COVID-19, the true impact of the pandemic on the sleep of children and adolescents with Tourette syndrome may be ascertained.

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Colreavy, E., Keenan, L., & Downes, M. (2023). The impact of the COVID-19 pandemic on sleep in children with Tourette syndrome in Ireland and the United Kingdom. Journal of Clinical Sleep Medicine, 19(8), 1485-1493.

Published in European Journal of Epilepsy, Volume 108, May 2023, Pages 60-65.

Abstract

Purpose: Childhood epilepsy can have lasting effects which extend beyond those attributed to seizures. Previous studies have explored the lived experience of childhood epilepsy, but to our knowledge, no study has afforded adults with a diagnosis of childhood epilepsy the opportunity to reflect on their experiences. In comparison with children, adult respondents have the benefit of ample time having lapsed in order to process their experiences and have greater linguistic competencies. The aim of this study was to retrospectively capture, via interview, adults' perceptions of the impact of epilepsy during their childhood.

Methods: A semi-structured interview schedule was developed in collaboration with patient experts to investigate participants' experiences of growing up with epilepsy in Ireland. Thirteen Irish adults aged between 18 and 35 years, who had their first seizure before the age of 16, were interviewed. Data was analysed using Big Q reflective thematic analysis.

Results: Three main themes and 14 subthemes were generated from the data. The main themes comprised (1) disenfranchised grief, (2) need to belong and (3) walking in my shoes.

Conclusion: All three themes demonstrated a common need for patient care that is cognisant of the child's developmental stage and psychosocial health, and the myriad of factors that contribute to both. Information, resources and clinical engagement with children with epilepsy require the input of patients with current or past experience of childhood epilepsy to guide development. A co-production approach is needed to address some of the disenfranchised and isolating experiences recollected by our participants.

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Sherlock, C., Linehan, C., Madigan, C., & Downes, M. (2023). ‘A rollercoaster of emotions’: Reflections on growing up with epilepsy in Ireland. Seizure: European Journal of Epilepsy, 108, 60-65.

Published in Children, Volume 9, October 2022.

Abstract

The current study explored the potential influence of infant sleep, measured by parental report and actigraphy, and family functioning on attention development using eye tracking. The use of actigraphy in parallel with parental report, has the advantage of measuring participant’s sleep throughout the night without parental observation and the ability to objectively assess sleep quality. An eye-tracking version of the Gap-Overlap task was used to measure visual attention. Questionnaires and behavioural assessment were used to assess family function, and general cognitive development. Fifty infants (Mean age = 13.44 months, SD = 3.10) participated in the study, 23 of which had full final datasets. Results show that daytime sleep duration, as measured by parental report, and proportion of light sleep at night, as measured by actigraphy, are linked to visual attention. A higher proportion of light sleep, a marker of poorer sleep quality, and less daytime sleep were negatively linked with facilitation and disengagement on the Gap-Overlap task. Family functioning was not associated with attention. The results provide initial evidence that in addition to the amount of daytime sleep; quality of night-time sleep as measured by proportion of light sleep, is a potentially useful sleep variable which requires further focus in the study of attention development.

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Hasshim, N., Bramham, J., Keating, J., Gaffney, R. A., Keenan, L., Conroy, S., ... & Downes, M. (2022). Links between daytime napping, night-time sleep quality and infant attention: an eye-tracking, actigraphy and parent-report study. Children, 9(11), 1613.