Child; Humans; Quality of Life; Cross-Sectional Studies; Proxy; Kidney Diseases/therapy; Parents; Surveys and Questionnaires; Children; Illness-related parental stress; Kidney disease; Multicentric; Quality of life; Transplantation
Abstract :
[en] BACKGROUND: This cross-sectional study investigated quality of life (QoL) and illness-related parental stress in children with kidney diseases by (1) comparing mean levels of these two variables between several kidney disease categories; (2) exploring correlations between QoL and parental stress; and (3) describing which disease category reports lowest QoL and highest parental stress. METHODS: We included 295 patients with a kidney disease (0-18 years) and their parents, followed at 6 reference centers for pediatric nephrology. Children's QoL was assessed by the PedsQL™ 4.0 Generic Core Scales, and illness-related stress by the Pediatric Inventory for Parents. All patients were divided into 5 kidney disease categories according to the multidisciplinary care program criteria prescribed by the Belgian authorities: (1) structural kidney diseases, (2) tubulopathies and metabolic diseases, (3) nephrotic syndrome, (4) acquired diseases with proteinuria and hypertension, and (5) kidney transplantation. RESULTS: Child self-reports showed no differences in QoL between kidney disease categories, in contrast to parent proxy reports. Parents of transplant patients reported lower QoL in their child and more parental stress compared with the 4 non-transplant categories. QoL and parental stress were negatively correlated. Lowest QoL and highest parental stress scores were mainly found in transplant patients. CONCLUSIONS: This study showed lower QoL and higher parental stress in pediatric transplant patients compared with non-transplants, based on parent reports. Higher parental stress is associated with worse QoL in the child. These results highlight the importance of multidisciplinary care for children with kidney diseases, with special attention to transplant patients and their parents. A higher resolution version of the Graphical abstract is available as Supplementary information.
Disciplines :
Pediatrics Urology & nephrology
Author, co-author :
De Bruyne, Elke ; Pediatric Psychology, Department of Pediatrics, Ghent University Hospital, Ghent, Belgium. Elke.debruyne@uzgent.be.
Willem, Lore ; Department of Child Nephrology and Organ Transplantation, Leuven University Hospital, Louvain, Belgium. Lore.willem@uzleuven.be.
Van Hoeck, Koen ; Department of Pediatric Nephrology, Antwerp University Hospital, Edegem, Belgium.
Reynaert, Sarah; Department of Pediatric Nephrology, Antwerp University Hospital, Edegem, Belgium.
Vankerckhove, Sylvie ; Department of Pediatric Nephrology, Queen Fabiola Children's University Hospital Brussels, Brussels, Belgium.
Adams, Brigitte ; Department of Pediatric Nephrology, Queen Fabiola Children's University Hospital Brussels, Brussels, Belgium.
Leroi, Stéphanie ; Department of Pediatric Nephrology, CHC-MontLégia, Health Group CHC Liège, Liege, Belgium.
Collard, Laure ; Centre Hospitalier Universitaire de Liège - CHU > > Service de pédiatrie ; Department of Pediatric Nephrology, CHC-MontLégia, Health Group CHC Liège, Liege, Belgium.
Michaux, Aline; Department of Pediatric Nephrology, Saint-Luc Brussels University Hospital, Brussels, Belgium.
Godefroid, Nathalie ; Department of Pediatric Nephrology, Saint-Luc Brussels University Hospital, Brussels, Belgium.
Mekahli, Djalila ; Department of Child Nephrology and Organ Transplantation, Leuven University Hospital, Louvain, Belgium.
Knops, Noël ; Department of Child Nephrology and Organ Transplantation, Leuven University Hospital, Louvain, Belgium.
Eloot, Sunny ; Department of Nephrology, Ghent University Hospital, Ghent, Belgium.
Raes, Ann ; Department of Pediatric Nephrology & Rheumatology, Ghent University Hospital, Ghent, Belgium.
Walle, Johan Vande ; Department of Pediatric Nephrology & Rheumatology, Ghent University Hospital, Ghent, Belgium.
Van Hoecke, Eline ; Pediatric Psychology, Department of Pediatrics, Ghent University Hospital, Ghent, Belgium.
Snauwaert, Evelien ; Department of Pediatric Nephrology & Rheumatology, Ghent University Hospital, Ghent, Belgium.
Levtchenko, Elena ; Department of Child Nephrology and Organ Transplantation, Leuven University Hospital, Louvain, Belgium.
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