Moebius sequence: behaviour problems of preschool children and parental stress.

Summary: Moebius sequence: Behaviour problems of preschool children and parental stress: This study investigates behaviour problems of preschool children with Moebius sequence, and their primary caregivers' stress. To this end, parents of all preschool children with Moebius sequence known to the German Moebius foundation were anonymously asked to fill out questionnaires, e.g. the Child Behavior Checklist [CBCL] 1.5-5. The primary caregivers of 13/22 children (seven males, six females; mean age: 3;10 [2;1-5;11] years) sent back filled-out questionnaires. Two children were rated as clinical on the CBCL-1.5-5. Boys had significantly higher scores on the scales aggressive behavior and total problems than girls. Compared to the general population, but not to other parents of mentally and / or physically handicapped children, the primary caregivers experienced higher levels of stress. In conclusion, preschool children with Moebius sequence do not show essentially increased rates of clinical behaviour problems. Nevertheless, their primary caregivers experience increased stress and need early and adequate support. Key words: Moebius sequence - Behaviour problems - Preschool children - Parental stress INTRODUCTION Moebius syndrome [OMIM no. 157900], or better Moebius sequence, is a rare, non progressive congenital condition. Today, there is no agreement on the minimal criteria for diagnosis. Some researchers regard congenital facial nerve palsy [complete or incomplete] as sufficient (12), while others defined the sequence as a combination of both congenital sixth and seventh nerve palsies (9,23). Etiology and pathogenesis are still not fully understood (12,23). Much of our knowledge of the sequence is derived from case reports. Due to the limited prevalence of Moebius sequence, nearly all studies included less than 30 patients which limits generalisation of the findings (5). The representativeness of almost all samples is highly questionable, and longitudinal studies are completely missing (5). Most case reports and studies focused on physical anomalies in Moebius sequence whereas behavioural or psychiatric aspects have been less covered (5). Disturbances in psychomotor and speech development are said to be very common (18,23), and mental retardation is estimated to occur in 10-15 % (11). The incidence of autistic spectrum disorders might be increased in patients with Moebius sequence (9,23). Until now, there have been no systematic studies on other psychiatric disorders, studies using a dimensional approach to describe behaviour problems are totally missing. Additionally, nothing is known about stress and life satisfaction of parents of children with Moebius sequence, which are important aspects for counseling. Therefore, the aim of this study was to investigate a) behaviour problems of 1;6 - 5; 11 year old children with Moebius sequence, and b) stress and life satisfaction of their primary caregivers. METHODS PARTICIPANTS With support of the German Moebius foundation the primary caregivers of all known children aged 1;6 - 5; 11 years were anonymously asked to participate in a nationwide study. By post, all caregivers received: - a questionnaire to compile personal, somatic and psychosocial history of the patients. - the Child Behavior Checklist [CBCL] 1.5-5 (2,3). As there has been no German normation until now, American norms were used. - the Social Orientation of Parents with Handicapped Children [SOEBEK] questionnaire (10) - a German questionnaire for parents of children with mental and / or physical handicap. A good correlation could be found between parental stress (SOEBEK) and the total score of the Parenting Stress Index (1,17). - questions of the subscales strain, life satisfaction and somatic complaints of the Freiburger Personality Inventory-Revised [FPI-R] (8). STATISTICAL ANALYSIS Statistical analysis of the results was done using SPSS 12. …