Measuring quality of life of Finnish children with cerebral palsy.
OBJECTIVE
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.


CONCLUSIONS
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.
Neuropediatric Unit of Turku Health Care and Social Services, Turku, Finland.
Sanna
S
Böling
Varho
V
Tarja
Mäenpää
M
Helena
Forsten
F
Wivi
Autti-Rämö
AR
Ilona
Haataja
H
Leena
D017028:Caregivers / Q000523:psychology*; D002547:Cerebral Palsy / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005387:Finland; D006801:Humans; D010146:Pain / Q000523:psychology; D011788:Quality of Life; D012649:Self Concept; D011795:Surveys and Questionnaires
Cerebral palsy; child; quality of life; questionnaire