Health‐related quality of life in children with sickle cell disease: child and parent perception

Abstract

SummaryHealth‐related quality of life (HRQL) is an outcome that may be used to measure the impact of sickle cell disease on the child and their family but has not been routinely assessed in this disease. The objective of this study was to describe the HRQL of children with sickle cell disease as reported by the parent and the child, to compare the relationship between the two, and to determine the association of parent, child and disease characteristics on HRQL. Ninety‐five parents completed the Child Health Questionnaire (CHQ)‐Parent Form28 and 53 children completed the CHQ‐Child Form87. Compared with the child report, parents reported worse HRQL in the overall perception of health, physical functioning, behaviour and self esteem domains of HRQL (P < 0·005). Parent and child reports of HRQL correlated strongly in assessment of the impact of bodily pain (r = 0·58) on HRQL and moderately in physical functioning (r = 0·44), behaviour (r = 0·45), general health (r = 0·44), self esteem (r = 0·40) and changes in health (r = 0·33) domains. Disease status, neurobehavioral co‐morbidities, and parent education were associated with the HRQL of the child. Both the parent and child perspectives are needed to fully understand the impact of sickle cell disease on the HRQL of the child and effect of this disease on the family.

Qualidade de vida em portadores de doença falciforme

“…Palermo et al (21) reported a greater commitment with physical health among adolescents with SCD than among children when they evaluated HRQL of children and adolescents according to their parent. However, Panepinto et al (22) did not find any significant differences in HRQL when comparing the scores of children and adolescents with SCD, neither in the physical nor in the psychosocial domains.…”

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.…”

“…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.…”

“…61 In children with congenital conditions, there was consistency in studies of children with cerebral palsy, using various measures of QoL; children rated their QoL higher than parents did. 11,49 For other conditions, there was less consistency in the direction of discrepancy between self-report and proxy report, with some studies reporting lower scores by parents than children 34,45,47,51,56 ; in other studies, parents reported higher scores than children. 31,46,55 Consistent with a previous review, 9 , we found that QoL domain in studies of children with congenital conditions had a significant impact on self-report-proxy disagreement, with more agreement for objective domains (eg, physical health-related quality of life [HRQoL]) and less for subjective domains (eg, emotional and psychosocial well-being).…”

“…31,46,55 Consistent with a previous review, 9 , we found that QoL domain in studies of children with congenital conditions had a significant impact on self-report-proxy disagreement, with more agreement for objective domains (eg, physical health-related quality of life [HRQoL]) and less for subjective domains (eg, emotional and psychosocial well-being). 45,48,51,52,58,59 This finding may be partially explained by parents' perception of a large effect of functioning level on any dimension of child' s QoL (eg, in children with cerebral palsy), whereas according to self-report, functioning was not associated with emotional and social well-being. 52 Similarly, although younger (8-12 years) boys with DMD had significantly higher scores for physical functioning than 13-to 17-year-old boys, there was no difference for psychosocial functioning despite the likely disease progression.…”