Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

Abstract

This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life.

Natural History of Vanishing White Matter

“…This change of internal standards or “response‐shift”41 is not represented in the HUI. In the majority of patients, the responses were generated by parents and health professionals, who tend to provide lower valuations for HRQL than patients,39, 42, 43 suggesting that the discrepancy between HRQL as perceived by patients and as perceived by society may even be greater. No agreement exists on how to do justice to both the objective function and the subjective judgment of HRQL.…”

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

“…There was substantial variation between these studies in sample size and in the approach to data analysis and presentation. Ten studies analyzed the level of agreement between child and parent scores through correlations 11,33,40,[45][46][47][48][49][50][51] (Pearson or Spearman rank correlation or intraclass correlation coefficients), whereas 11 used other approaches in which there was no statistical analysis of self-proxy agreement reported 31,34,[52][53][54][55][56][57][58][59][60] (Table 3). Only 1 study analyzed the magnitude of the disagreement or agreement, taking into account the average SDs of the child and parent scores (effect size), the direction of self-proxy difference, and the factors affecting it.…”

“…Only 1 study analyzed the magnitude of the disagreement or agreement, taking into account the average SDs of the child and parent scores (effect size), the direction of self-proxy difference, and the factors affecting it. 11 Of the 21 studies, the most common conditions were as follows: cerebral palsy (n = 5), cystic fibrosis (n = 4), and CHD (n = 4). Most studies used generic QoL questionnaires that have both The majority of these studies reported that a child' s perception of QoL differed from that of his or her parents, with parents frequently underestimating their children' s QoL, 11,49,56 in particular in subjective domains (eg, emotional and psychosocial).…”

“…11 Of the 21 studies, the most common conditions were as follows: cerebral palsy (n = 5), cystic fibrosis (n = 4), and CHD (n = 4). Most studies used generic QoL questionnaires that have both The majority of these studies reported that a child' s perception of QoL differed from that of his or her parents, with parents frequently underestimating their children' s QoL, 11,49,56 in particular in subjective domains (eg, emotional and psychosocial). 34,45,47,49,51,52,58,59 Despite reports of weak correlation 11,47,48 or large differences in mean scores 58 between selfreports and proxy reports for the emotional domain, White-Koning et al 11 demonstrated that the self-report-proxy agreement rate for "emotions" was higher (44%) than for most domains (range: 25%-40%).…”

“…7 Proxy reports are often used for a child' s QoL assessment because a child is too ill or has difficulties communicating their views due to their age or because of neurocognitive impairment, 8 but also because, traditionally, children were considered unreliable reporters. 9 However, a number of studies have highlighted low levels of agreement between parent and child perspectives about the consequence of a condition on the child' s QoL [9][10][11] (specifically, with poorer agreement on emotional and social domains than on physical domains 9,12,13 ), thus implying the importance of obtaining both child and parent perspectives whenever possible. 9 Several key reviews have examined studies that used QoL measures for children and adolescents.…”