Survey of behaviour problems in children with neuromuscular diseases

Area of Science:

• Pediatric Neurology
• Child Psychology
• Public Health

Background:

• Previous clinic-based studies indicated potential mental health issues in children with neuromuscular diseases.
• A need exists to understand the prevalence of social, communication, and behavioral problems in a broader population of these children.

Purpose of the Study:

• To determine the prevalence of social, communication, and behavioral problems in middle childhood among children with neuromuscular diseases.
• To assess the association between these problems and unmet needs reported by caregivers.

Main Methods:

• A total population study interviewed 82 caregivers of children (aged 5-13) with diagnosed neuromuscular disease in the UK's Northern Region.
• 66 participants completed the Strengths and Difficulties Questionnaire, Social Communication Questionnaire, and Children's Communication Checklist.
• Data on service utilization and needs were also collected.

Main Results:

• Two-fifths of children scored above the clinical cut-off on at least one questionnaire, significantly higher than general population samples.
• Nine children (out of 82) were diagnosed with autism spectrum disorder.
• Caregivers of children with problems reported significantly higher levels of unmet needs.

Conclusions:

• Behavioral, social, and communication problems are common in children with neuromuscular diseases.
• Regional Neuromuscular Clinics should implement mental health screening and assessment protocols.
• Addressing these issues is vital for improving the well-being of children with neuromuscular diseases.