22q11.2 deletion syndrome: behaviour problems of infants and parental stress

Background  22q11.2 deletion syndrome (22q11.2 DS) can be associated with a variety of somatic symptoms, developmental delays and psychiatric disorders. At present, there is little information on early behaviour problems, and nothing is known about parental stress and possible relations between these factors. Therefore, the aim of this study was to investigate behaviour problems of infants with 22q11.2 DS, and their primary caregivers’ stress. Methods  Parents of infants with 22q11.2 DS known to the German 22q11.2 deletion syndrome foundation were anonymously asked to fill out several questionnaires, e.g. the Child Behavior Checklist (CBCL) 1.5–5. Results  The primary caregivers of 22/30 children [12 boys and 10 girls aged 1 year 8 months to 3 years 11 months (mean age: 2 years 9 months)] sent back filled-out questionnaires. Seventeen out of 21 children showed motor, and 15/21 language delay. Five out of 21 children were rated as clinical on at least one CBCL 1.5–5 scale. The patients’ age was correlated with anxiety problems, and girls had significantly more sleep problems than boys. Compared with the general population, the primary caregivers did not experience higher levels of strain, and compared with parents of mentally and/or physically handicapped children, their parental stress was significantly lower. Parental stress and strain were correlated to a variety of child behaviour problems, e.g. externalizing and anxious/depressed behaviour. Conclusions  Longitudinal studies are required to show whether behaviour problems and parental stress worsen when 22q11.2 DS patients grow older.