Measuring health-related quality of life in Hungarian children attending a cardiology clinic with the Pediatric Quality of Life Inventory™

Abstract

The aim of the study was to evaluate health-related quality of life (HRQoL) of Hungarian children attending a pediatric cardiology outpatient unit with the Pediatric Quality of Life Inventory (PedsQL) questionnaire. The PedsQL Generic Core Scales and Cardiac Module were administered to 254 families including 195 children during a pediatric cardiology outpatient visit, and 525 families including 373 children from the general population were examined by the PedsQL Generic Core Scale by a postal survey. The relationships between PedsQL scores and patient characteristics were analyzed. Hungarian children attending a cardiology outpatient unit as an entire group and patients with severe heart diseases report significantly lower physical functioning than the general population, while more HRQoL dimensions are negatively affected according to the parents' opinion. Children with congenital heart disease of mild and great complexity also report impaired psychosocial functioning. HRQoL impairment is concentrated to the age of 5-7 years. Comparing our results with previous ones on U.S. pediatric cardiologic samples, we found significantly lower scores mainly for the physical functioning and heart symptoms subscales. This HRQoL study with an internationally well-validated instrument on children with heart disease in a Central European country highlights certain aspects of the health-care system and brings the possibility for the assessment of pediatric cardiology outcomes in a more comprehensive way.

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

“…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. 30 However, there were no significant differences between younger (6-11 years) and older ($14 years) age groups of patients with cystic fibrosis in all domains of selfreported QoL measured by using the Cystic Fibrosis Questionnaire (CFQ), except "treatment."…”

“…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.…”

“…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%). 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.…”