Mental health and behaviour in children with dystonia: Anxiety, challenging behaviour and the relationship to pain and self-esteem

Lauren Bates, Dr Michelle Taylor, Jean-Pierre Lin, Hortensia Gimeno, Jess Kingston, Sarah Rudebeck

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Purpose: To ascertain whether young people with dystonia are more likely than the general population to have mental health and/or behavioural difficulties, and to explore factors that may contribute to these difficulties.Method: Using a quasi-experimental design, 50 young people with dystonia aged 7–17 and their carers were recruited from the Evelina London Children's Hospital. Young people completed the Beck Youth Inventories and the Strengths and Difficulties Questionnaire. Carers completed the Strengths and Difficulties Questionnaire-Parent version and the Paediatric Pain Profile. Important medical factors, such as age of onset, motor severity and manual function were obtained from medical records.Results: One sample z tests showed young people with dystonia self-reported significantly higher levels of anxiety (p < .001) and prosocial difficulties (p < .01), with 48% experiencing clinically significant anxiety levels. They experienced significantly lower levels of anger, disruptive behaviour and conduct problems (all p ≤ .01). Carers reported significantly higher rates of emotional problems, hyperactivity and peer problems, and significantly lower prosocial behaviours (all p ≤ .01). Pearson's correlation coefficients showed lower levels of self-esteem were related to higher levels of anxiety (p = .015). High levels of pain were related to parent-rated conduct problems (p = .004). Age of dystonia onset and motor severity did not correlate with any of the psychological or behavioural measures. Interpretation/conclusions: Our study suggests high rates of anxiety and behaviours that challenge in children with dystonia. Screening in movement clinics would be helpful in early identification and signposting for support.
Original languageEnglish
Pages (from-to)40-48
Number of pages9
JournalEuropean Journal of Paediatric Neurology
Early online date14 Sept 2021
Publication statusPublished - Nov 2021


  • dystonia
  • mental health
  • anxiety
  • pain
  • self-esteem
  • Dyskinetic cerebral palsy

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