Survey of behaviour problems in children with neuromuscular diseases

Abstract

Previous research on clinic samples has suggested that children with neuromuscular diseases may be affected by mental health problems. The aim of this study was to establish the carer-reported prevalence of social, communication, and behavioural problems in middle childhood in a total population with neuromuscular diseases. From a target population of 111, 82 carers of children aged 5–13 years with a diagnosed neuromuscular disease living in the Northern Region of UK were interviewed about service utilisation and needs, and 66 completed the Strengths and Difficulties Questionnaire, Social Communication Questionnaire and Children's Communication Checklist. Two-fifths of children scored above the clinical cut-off on at least one questionnaire. These results were significantly higher than are reported for national and normally developing samples. Nine out of 82 had a diagnosis of autism spectrum disorder. Carers of children with problems reported significantly higher levels of unmet need. Behaviour, social and communication problems are common in children with neuromuscular diseases and Regional Neuromuscular Clinics should consider mental health screening and assessment.