Longitudinal study showed that the quality of life of Finnish adolescents with cerebral palsy continued to be relatively good.

AIM: This longitudinal study examined what perceptions paediatric patients with cerebral palsy (CP) and their caregivers had of the patient's quality of life (QoL). It examined changing trends as children with CP became adolescents and examined the feasibility of the Finnish version of the CP QOL-Teen questionnaire. METHODS: Carried out in autumn 2015, this study formed part of the multi-centre Finnish national CP project and aimed to validate the CP QOL-Teen questionnaire, which was posted to 54 adolescents and their caregivers. They included 24 who had responded to CP QOL-Child questionnaire in 2013. RESULTS: The questionnaires were returned by 27 pairs of adolescents and caregivers and one extra caregiver also responded. Of these, 24 pairs had taken part in the 2013 survey. The internal consistencies of the sum variables were found to be acceptable in all cases. Overall QoL showed an average score of 81.8 on a scale from 0 to 100. Adolescents reported significantly higher QoL than their caregivers. There were no significant differences between the responses of the children and adolescents. CONCLUSION: 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.

Quality of life of Finnish children with cerebral palsy.

PURPOSE: The aim of this study was to examine the quality of life (QOL) of Finnish children with cerebral palsy (CP) in different parts of Finland from the children's and caregivers' perspectives. The acceptability of the Finnish version of the CP QOL-Child questionnaire for clinical use is also evaluated. METHOD: This study was conducted in 2010-2013 as a part of the national CP-project. It is based on validated CP QOL-Child questionnaires. Children between 9 and 12 years were asked to fill in the child-self-report version. Caregivers who had a 4- to 12-year-old child with CP filled in parent-proxy reports. RESULTS: Responses were obtained from 63 children and 161 caregivers. The response rates were 63 and 60%, respectively. Overall QOL was reported to be fairly good with no significant regional differences within Finland. Children reported significantly higher QOL in all QOL-domains except "social wellbeing and acceptance" than their caregivers did. The results showed acceptable levels of internal consistency of the Finnish version of the CP QOL-Child. CONCLUSIONS: QOL of children with CP is quite good in Finland. However, barriers to participation and the impact of disability and pain impair QOL. The Finnish version of the CP QOL-Child questionnaire is an appropriate clinical tool to assess QOL. IMPLICATIONS FOR REHABILITATION: 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.

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.