Quality of Life in Children With Heart Disease as Perceived by Children and Parents

Abstract

Overall, children with cardiovascular disease perceived lower quality of life than healthy children across all age groups. As perceived by parents, overall quality of life was not significantly different in young children with cardiovascular disease, but children with more severe cardiovascular disease have worse physical and psychosocial quality of life. One in 5 children with cardiovascular disease perceives impaired psychosocial functioning, including children with mild disease severity.

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

“…40 In contrast, in a study using PedsQL, for both 5-to 7-year-olds and 8-to 12-year-olds, QoL in children with CHD was found to be significantly lower in all domains compared with the age-matched reference group. 33 Self-reported QoL in 8-to 12-year olds in another similar study was comparable with control subjects. 34 Younger children (aged 8-10 years) with orofacial clefts had a significantly higher average global health-oral score than the 15-to 18-year-olds.…”

“…Nevertheless, some studies found that parents overestimated the QoL of their children; for example, for positive emotions in children with congenital hypothyroidism 58 or for all domains for 5-to 7-year-olds with CHD. 33 Interestingly, using the same QoL instrument (KINDL), 8-to 12-year-old children with hearing impairment rated their overall QoL significantly lower than their parents did in one study, 55 whereas in another study, hearing-impaired younger children (aged 4-7 years) reported significantly better QoL than parents did on the overall score. 54 Overall, studies using either a more functioning-oriented instrument (eg, CHQ, PedsQL, TACQOL) or a more well-being-oriented instrument (eg, KIDSCREEN, KINDL) found discrepancies between self-reports and proxy reports.…”

“…Some studies included older children in their sample but separated results for the younger cohort. [27][28][29][30][31][32][33][34] The studies covered a variety of conditions, including congenital heart disease (CHD) (n = 7), cerebral palsy (n = 2), hemophilia (n = 2), and orofacial clefts (n = 2). The majority of studies either used reference data or a control group for comparison; the remaining studies used within-group age comparisons 27,28,31 or compared one congenital condition with a related condition.…”

“…We identified 21 studies that collected QoL data from both children and parents (5 of 21 are also presented in Table 2 31,33,34,40,46 ). There was substantial variation between these studies in sample size and in the approach to data analysis and presentation.…”

“…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.…”