The used questionnaire provides an effective tool to identify areas for targeting support actions and to set goals for rehabilitation plans. The study brings forward the voices of children. It was found that pain has a great role in QOL, which should be taken into account when making rehabilitation plans. The participation of children with CP should be strengthened in every possible ways.
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.
We showed that QoL was relatively good in childhood and adolescence. The Finnish version of the CP QOL-Teen questionnaire was an appropriate clinical tool for assessing QoL.
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