title: Perception of health-related quality of life in children with chronic kidney disease by the patients and their caregivers: multicentre national study results.
abstract: OBJECTIVE
  The aim of the study was to analyse the health-related quality of life (HRQoL) in Polish children with chronic kidney disease (CKD) dependant on the CKD stage, treatment modality and selected social life elements in families of the patients. Furthermore, potential differences between self-report and parent/proxy reports and the factors influencing them were assessed.
  
  
  METHODS
  A total of 203 CKD children (on haemodialysis (HD), peritoneal dialysis (PD) and conservative treatment (CT)) and their 388 parent/proxies were enrolled into a cross-sectional national study. The demographic and social data were evaluated. We used the Paediatric Quality of Life Inventory 4.0 Generic Core Scales to assess the HRQoL in children.
  
  
  RESULTS
  Health-related quality of life scores for all CKD groups were significantly lower in all domains compared with population norms, the lowest one being in the HD group. In CT children, HRQoL did not depend on the CKD stage. Both parents assessed the HRQoL of their children differently depending on their involvement in the care. There are differences between the HRQoL scores of the children and their parents.
  
  
  CONCLUSIONS
  The HRQoL in children with CKD is lower than in healthy children. This is already observed in the early stages of the disease. The disease itself influences the child's mental state. Children on HD require special support on account of the lowest demonstrated overall HRQoL. Children's lower rating of the quality of life observed by their parents may render the patients unmotivated and adversely affect their adjustment to life in later years. It may also create conflicts between the parents and the children.
authors.affiliation: Department of Paediatric Nephrology, Wroclaw Medical University, ul. Borowska 213, 50-556, Wrocław, Poland, katarzyna.kilis-pstrusinska@am.wroc.pl.
authors.forename: Katarzyna
authors.initials: K
authors.lastname: Kiliś-Pstrusińska
authors.forename: Anna
authors.initials: A
authors.lastname: Medyńska
authors.forename: Irena Bałasz
authors.initials: IB
authors.lastname: Chmielewska
authors.forename: Ryszard
authors.initials: R
authors.lastname: Grenda
authors.forename: Agnieszka
authors.initials: A
authors.lastname: Kluska-Jóźwiak
authors.forename: Beata
authors.initials: B
authors.lastname: Leszczyńska
authors.forename: Julita
authors.initials: J
authors.lastname: Niedomagała
authors.forename: Ilona
authors.initials: I
authors.lastname: Olszak-Szot
authors.forename: Monika
authors.initials: M
authors.lastname: Miklaszewska
authors.forename: Maria
authors.initials: M
authors.lastname: Szczepańska
authors.forename: Marcin
authors.initials: M
authors.lastname: Tkaczyk
authors.forename: Agnieszka
authors.initials: A
authors.lastname: Urzykowska
authors.forename: Anna
authors.initials: A
authors.lastname: Wasilewska
authors.forename: Katarzyna
authors.initials: K
authors.lastname: Zachwieja
authors.forename: Maria
authors.initials: M
authors.lastname: Zajączkowska
authors.forename: Helena
authors.initials: H
authors.lastname: Ziółkowska
authors.forename: Ilona
authors.initials: I
authors.lastname: Zagożdżon
authors.forename: Danuta
authors.initials: D
authors.lastname: Zwolińska
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D063868:Patient Outcome Assessment; D010465:Perception; D011044:Poland; D019727:Proxy / Q000523:psychology; D011788:Quality of Life / Q000523:psychology*; D006435:Renal Dialysis; D051436:Renal Insufficiency, Chronic / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy*; D057566:Self Report; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D012959:Socioeconomic Factors