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

Abstract

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).

Functioning and health‐related quality of life of adolescents with cerebral palsy: self versus parent perspectives

“…noted the importance of a clear definition of terms when assessing outcomes, stating that ‘functional status refers to what a child can do, whereas QOL refers to how a child feels.’ QOL and health‐related quality of life (HRQL) assessments evaluate subjective well‐being, with QOL denoting holistic well‐being, and HRQL health‐related well‐being. In recent years there has been discussion on whether parent, patient, or both should report on functioning and QOL in CP 4–15 …”

“…evaluated CP QOL‐Child (condition‐specific, 4–12y), preliminary results showing good parent and self correlations ( r =0.52–0.77, p <0.01). Davis et al 8 . encouraged the collection of self‐ and parent‐reports, noting instances where ‘parents may be more able to rate some aspects of their child’s QOL’, because of ‘cognitive immaturity, limited social experience, and continued dependency.’ In a European generic HRQL questionnaire (KIDSCREEN), results showed discordance in scores and reasoning for answers between parents and children aged 8 to 12 years.…”

“…In recent years there has been discussion on whether parent, patient, or both should report on functioning and QOL in CP. [4][5][6][7][8][9][10][11][12][13][14][15] The current study was part of a Cerebral Palsy Longitudinal Assessment Database project (CPLAD) to assess functioning and HRQL in ambulatory children with CP. The null hypothesis stated there would be no difference in perceptions between parents and adolescents with CP, on the Pediatric Outcomes Data Collection Instrument (PODCI), assessing functioning and HRQL.…”

A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy

“…For example, a CP specific outcome measure would be able to explore a child's feelings surrounding any adaptive equipment that they require, or feelings surrounding medical, surgical or therapeutic interventions, whereas these topics would be beyond the scope of a generic outcome measure, thus omitting potentially important aspects of daily life from review. This review will focus on the role of condition specific QOL measures as it is thought that such instruments offer a greater depth of insight into the QOL of children with CP [11]. As with all outcome measures, measures of QOL should be valid, reliable, and responsive to change for the population of interest while also being easy to complete, analyse and access [12].…”

Recent developments in functional assessment tools for ambulatory cerebral palsy

“…8 The studies mentioned so far have used the CHQ and the PedsQL as measures of quality of life, although there are other measurement tools available in the literature. 13,14,15,16 In the above studies, the quality of life measures do not correlate with measures of functioning. This topic was addressed by Shelly et al 14 recently.…”