Illness-related parental stress and quality of life in children with chronic kidney diseases : a multicentric Belgian study

Objectives Monitoring the psychological well-being of children with chronic kidney disease (CKD) is seen as standard care in pediatric nephrology, as many studies have shown that CKD has a great psychological impact. This multi-centric cross-sectional study investigated quality of life (QoL) and illness-related parental stress in this population by 1/ comparing mean levels of these two variables between several CKD categories, and 2/ exploring their correlation. Methods We recruited children with CKD and their parents, followed at the 6 Belgian reference centers for pediatric nephrology. Childrens’ QoL was assessed by the PedsQLTM 4.0 Generic Core Scales, parental stress was measured by the Pediatric Inventory for Parents (PIP). All patients were divided in categories based on their CKD diagnosis: 1/congenital diseases 2/ tubulopathies and metabolic diseases, 3/ nephrotic syndromes, 4/ acquired diseases with proteinuria and hypertension, and 5/ kidney transplantations. Results In total we included 295 children (176 boys; M age= 11.8, SD = 3.7) and 285 parents. Fifty-seven children (19%) had a transplant. There were no significant differences in QoL between CKD categories as reported by children (p>.05). In contrast, there were significant differences between CKD categories in QoL (F(4, 220) = 3.46, p<.01)) and stress (F(4,269) = 2.92, p<.05), reported by parents, with transplant patients having lower QoL (t(220) = - 3.31; p = .001) and higher parental stress (t(269) = 2.30; p = .02). Finally, there were significant negative correlations (p < .001) between QoL and parental stress. Conclusions This multi-centric study showed lower levels of QoL and higher levels of parental stress in transplanted children, compared to children without a transplant, when based on parents’ reports. Higher parental stress is associated with worse QoL in the child. These results highlight the importance of a multidisciplinary team with special attention for the parents

Publication year:2022

Accessibility:Open