Behaviour problems of patients with Moebius sequence and parental stress.

Area of Science:

• Pediatric Neurology
• Developmental Psychology
• Clinical Genetics

Background:

• Moebius sequence is a rare congenital disorder characterized by facial paralysis and impaired ocular abduction.
• Limited data exists on behavioral issues and parental stress in affected children.
• Understanding these factors is crucial for effective family counseling and support.

Purpose of the Study:

• To investigate behavioral problems in children with Moebius sequence.
• To assess parental stress levels in caregivers of these children.
• To explore the relationship between child behavior and caregiver stress.

Main Methods:

• Anonymous questionnaires, including the Child Behavior Checklist (CBCL) 4-18, were administered to parents of children diagnosed with Moebius sequence.
• Data was collected from parents affiliated with the German Moebius Syndrome Foundation.
• A cohort of 31 children (15 males, 16 females; median age 10 years 7 months) met the inclusion criteria.

Main Results:

• Ten out of 31 subjects (32.3%) exhibited clinical scores on at least one CBCL scale; three had a total problem score in the clinical range.
• Social problems were prevalent, particularly in older children (12-17 years), occurring at five times the rate of younger children.
• Caregivers reported higher stress levels compared to the general population, correlating with child's anxious/depressed behavior, aggression, externalizing problems, and total problem scores.

Conclusions:

• Social difficulties are common in children with Moebius sequence aged 4-17.
• Primary caregivers experience significant psychological strain.
• Early and comprehensive support services are essential for families impacted by Moebius sequence.