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Illness-related parental stress and quality of life in children with kidney diseases

Elke De Bruyne (UGent) , Lore Willem, Koen Van Hoeck, Sarah Reynaert, Sylvie Vankerckhove, Brigitte Adams, Stéphanie Leroi, Laure Collard, Aline Michaux, Nathalie Godefroid, et al.
(2023) PEDIATRIC NEPHROLOGY. 38(8). p.2719-2731
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Abstract
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 (TM) 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.
Keywords
Nephrology, Pediatrics, Perinatology and Child Health, ERKNET center, psychology, Multicentric, Transplantation, Illness-related parental stress, Quality of life, Kidney disease, Children

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MLA
De Bruyne, Elke, et al. “Illness-Related Parental Stress and Quality of Life in Children with Kidney Diseases.” PEDIATRIC NEPHROLOGY, vol. 38, no. 8, Springer Science and Business Media LLC, 2023, pp. 2719–31, doi:10.1007/s00467-023-05911-3.
APA
De Bruyne, E., Willem, L., Van Hoeck, K., Reynaert, S., Vankerckhove, S., Adams, B., … Levtchenko, E. (2023). Illness-related parental stress and quality of life in children with kidney diseases. PEDIATRIC NEPHROLOGY, 38(8), 2719–2731. https://doi.org/10.1007/s00467-023-05911-3
Chicago author-date
De Bruyne, Elke, Lore Willem, Koen Van Hoeck, Sarah Reynaert, Sylvie Vankerckhove, Brigitte Adams, Stéphanie Leroi, et al. 2023. “Illness-Related Parental Stress and Quality of Life in Children with Kidney Diseases.” PEDIATRIC NEPHROLOGY 38 (8): 2719–31. https://doi.org/10.1007/s00467-023-05911-3.
Chicago author-date (all authors)
De Bruyne, Elke, Lore Willem, Koen Van Hoeck, Sarah Reynaert, Sylvie Vankerckhove, Brigitte Adams, Stéphanie Leroi, Laure Collard, Aline Michaux, Nathalie Godefroid, Djalila Mekahli, Noël Knops, Sunny Eloot, Ann Raes, Johan Vande Walle, Eline Van Hoecke, Evelien Snauwaert, and Elena Levtchenko. 2023. “Illness-Related Parental Stress and Quality of Life in Children with Kidney Diseases.” PEDIATRIC NEPHROLOGY 38 (8): 2719–2731. doi:10.1007/s00467-023-05911-3.
Vancouver
1.
De Bruyne E, Willem L, Van Hoeck K, Reynaert S, Vankerckhove S, Adams B, et al. Illness-related parental stress and quality of life in children with kidney diseases. PEDIATRIC NEPHROLOGY. 2023;38(8):2719–31.
IEEE
[1]
E. De Bruyne et al., “Illness-related parental stress and quality of life in children with kidney diseases,” PEDIATRIC NEPHROLOGY, vol. 38, no. 8, pp. 2719–2731, 2023.
@article{01GVR9TKPNZFQ58M4HEGKZSVJ3,
  abstract     = {{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 (TM) 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.}},
  author       = {{De Bruyne, Elke and Willem, Lore and Van Hoeck, Koen and Reynaert, Sarah and Vankerckhove, Sylvie and Adams, Brigitte and Leroi, Stéphanie and Collard, Laure and Michaux, Aline and Godefroid, Nathalie and Mekahli, Djalila and Knops, Noël and Eloot, Sunny and Raes, Ann and Vande Walle, Johan and Van Hoecke, Eline and Snauwaert, Evelien and Levtchenko, Elena}},
  issn         = {{0931-041X}},
  journal      = {{PEDIATRIC NEPHROLOGY}},
  keywords     = {{Nephrology,Pediatrics, Perinatology and Child Health,ERKNET center,psychology,Multicentric,Transplantation,Illness-related parental stress,Quality of life,Kidney disease,Children}},
  language     = {{eng}},
  number       = {{8}},
  pages        = {{2719--2731}},
  publisher    = {{Springer Science and Business Media LLC}},
  title        = {{Illness-related parental stress and quality of life in children with kidney diseases}},
  url          = {{http://doi.org/10.1007/s00467-023-05911-3}},
  volume       = {{38}},
  year         = {{2023}},
}
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