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Quality of life of children with CP: condition‐specific instrument and proxy reports

children in terms of their scores and the reasoning for their answer. Some parent–child pairs provided the same score but different reasoning. In one case, both parent and child rated the item ‘being in a good mood’ as ‘quite often’. However, whereas the parent’s answer was based on sporting activities and school performance by saying ‘when she’s played a good game of netball or done something good in school...then she’s in a good mood’; the child responded ‘quite often’ rather than ‘very often’ because she ‘got sunburnt’. The study also highlighted that children tended to have different response styles to parents, where, for example, children tended to provide extreme scores (highest or lowest score) and base their response on one single example, more than parents. The results from this study highlight that for children, because of their level of cognitive development, it is important to obtain their perspective and their parents’ perspective. Where a child cannot self-report, it is also important to not exclude them from a QOL study, but rather to measure QOL using proxy report, while acknowledging the limitations associated with proxy reports. Finally, the current study found that impairments were not associated with six KIDSCREEN domains, including psychological well-being and social support and peers. In support of Dickinson et al.’s paper, we have also examined this relationship using a questionnaire that, like KIDSCREEN, assesses subjective perceptions of QOL (Cerebral Palsy Quality of Life Questionnaire) and demonstrated that social and emotional domains (r=0.18, r=0.22 respectively) were less strongly correlated with functioning than physical health domains (r=0.39, r=0.62).3 Although these results are inconsistent with studies that measure QOL using the Pediatric Quality of Life Inventory or Child Health Questionnaire, it is proposed that the correlations between functioning and QOL are inflated, when the QOL items focus on a child’s difficulties or limitations (i.e. difficulty moving limbs, difficulty completing daily living tasks).