Affiliations: Neuropediatric Unit of Turku Health Care and Social
Services, Turku, Finland | University Hospitals for Children and Adolescents,
University of Helsinki, Helsinki, Finland | Research Department, Social Insurance Institution of
Finland, Helsinki, Finland | University Hospitals for Children and Adolescents,
University of Turku, Turku, Finland
Abstract: 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.
Keywords: Cerebral palsy, child, quality of life, questionnaire
