title: Quality of life and adjustment in children and adolescents with Moebius syndrome: Evidence for specific impairments in social functioning.
abstract: BACKGROUND
  Moebius syndrome is a rare congenital disorder characterized by congenital facial paralysis and impairment of ocular abduction. The absence of facial expression in people with Moebius syndrome may impair social interaction. The present study aims at replicating prior findings on psychological adjustment in children and adolescents with Moebius syndrome and providing first data on quality of life.
  
  
  METHODS
  Parents (n=26) and children and adolescents (n=14) with Moebius-Syndrome completed the KINDL(R) (Questionnaire for Measuring Health-Related Quality of Life in Children and Adolescents), the SDQ (Strengths and Difficulties Questionnaire), and a newly devised questionnaire on the global, social, and emotional impact of Moebius syndrome, including a scale that addressed what conjectures were made concerning the thoughts of other people about a child with Moebius syndrome.
  
  
  RESULTS
  In comparison with normative data, quality of life was reduced for the subscale Friends (large effect for both parental ratings and self-report) and the Total Score of the KINDL(R). Parents reported elevated levels of peer problems on the respective subscale of the SDQ. In SDQ self-report data, cases classified as abnormal were observed on Peer Problems only. Moebius-specific scales showed adequate reliabilities, and were related, most notably for parent-report, to quality of life. 29% of children reported feelings of anger when being stared at, and wished that they were not affected by Moebius syndrome.
  
  
  CONCLUSIONS
  Although most children and adolescents in our sample did not show behavioral problems or reduced quality of life, our results indicate that their emotional and social development should be closely monitored. Maintaining satisfying peer relationships seems to be a special challenge for children and adolescents with Moebius syndrome.
authors.affiliation: Ludwigsburg University of Education, Ludwigsburg, Germany.
authors.forename: Linda
authors.initials: L
authors.lastname: Strobel
authors.affiliation: Ludwigsburg University of Education, Ludwigsburg, Germany. Electronic address: renner@ph-ludwigsburg.de.
authors.forename: Gerolf
authors.initials: G
authors.lastname: Renner
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D020331:Mobius Syndrome / Q000523:psychology*; D010290:Parents; D011788:Quality of Life; D057566:Self Report; D012919:Social Behavior; D066107:Social Skills; D011795:Surveys and Questionnaires
keywords: Behavior problems; Facial paralysis; Moebius syndrome; Psychological adjustment; Quality of life; Social functioning