Measuring quality of life of Finnish children with cerebral palsy

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.

Health-related quality of life in children and adolescents with cerebral palsy

“…Children and adolescents rated their HRQoL higher than their caregivers in all domains, which is similar to the findings of other studies ( 11 , 22 ). One reason for that could be that children focus on their abilities, as their disability has always been a part of their functioning, while caregivers tend to compare the abilities of their children to those of healthy children ( 23 ).…”

“…Pain is a well-recognised predictor of decreased participation and poor HRQoL ( 5 , 10 , 11 , 21 ). In our study, it was related to lower scores in all groups.…”

“…In longitudinal studies, HRQoL in childhood correlated well with HRQoL in adolescence ( 5 ). Pain, parenting stress and psychological problems were identified as predictors of worse HRQoL ( 5 , 10 , 11 ). Although motor impairment influenced functioning and participation, it affected psychosocial wellbeing to a much lesser extent ( 9 ).…”

Assessment of quality of life in patients with cerebral palsy

“…The results obtained are similar to those achieved by other researchers. A similar classification of individual domains was presented, among others, by Wang, Böiling, Dmitruk, and Soilemani [7,[17][18][19]. In China, the average result for individual domains, calculated on a 100-point scale, was as follows: participation in social life and social acceptance -76.7; functioning -64.4; physical health and participation -66.6; emotional condition -73.3; pain and disability effects -60.0; access to health services -63.3; and health of parents/guardians -61.1 [17].…”

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

“…No significant differences were found when we compared the backgrounds of responders and non‐responders, not even when their level of disability was taken into consideration. The same trend was seen in our previous pilot study . We used a t ‐test to compare the responses of the caregivers and adolescents.…”