Measuring quality of life of Finnish children with cerebral palsy.

PURPOSE: The purpose of the study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP), both from the child's and the caregiver's point of view, and to analyze the effect of background factors on QOL. METHODS: This study is a part of a national CP research project. The study is based on validated questionnaires measuring QOL (CP QOL-Child). 128~questionnaires were sent to caregivers who had a 4 to 12 year-old child with CP. Children between 9 and 12 years were asked to fill in the child-self-report version. RESULTS: Responses were obtained from 78 guardians and 27 children, with a response rate of 61% in both cases. The overall QOL was reported to be good in Finnish children with CP. The correlation of QOL scores between the caregivers and children was good (n=25, r=0.687, p< 0.001), except in the domain of pain and the impact of disability. Parental estimates were consistently lower in all domains. Regarding the background factors, all the functional classification scales were associated inversely with QOL in both groups. CONCLUSION: Despite the good overall QOL, CP is perceived to limit participation. Pain impairs QOL, and pain symptoms should be systematically considered at every follow-up visit.

Adaptive behaviour in children and adolescents with foetal alcohol spectrum disorders: a comparison with specific learning disability and typical development.

Foetal alcohol spectrum disorders (FASD) is a leading cause of intellectual disability in the western world. Children and adolescents with FASD are often exposed to a double burden in life, as their neurological sequelae are accompanied by adverse living surroundings exposing them to further environmental risk. In the present study, the adaptive abilities of a group of children and adolescents with FASD were examined using the Vineland Adaptive Behaviour Scales (VABS) and compared to those of a group of IQ-matched children with specific learning disorder (SLD) as well as with typically developing controls (CON). The results showed significantly different adaptive abilities among the groups: Children with FASD performed worse than IQ-matched children with SLD, who in turn performed worse than typically developing children on all domains (communication, daily living skills and socialization) on the VABS. Compared to the other groups, social skills declined with age in the FASD group. These results support previous studies of adaptive behaviour deficits in children with FASD and provide further evidence of the specificity of these deficits. On a societal level, more efforts and resources should be focused on recognizing and diagnosing FASD and supporting communication skills, daily living skills and most of all social skills across diagnostic groups within FASD. Without adequate intervention, adolescents and young adults with FASD run a great risk of marginalization and social maladjustment, costly not only to society but also to the lives of the many young people with FASD.