title: Quality of life in children with chronic kidney disease (with child and parent assessments).
abstract: Herein the results of a multicenter study from the Turkish Pediatric Kidney Transplantation Study Group are reported. The aims of this study were to compare the quality of life (QoL) scores of Turkish children who are dialysis patients (DP), renal transplant recipients (TR), and age-matched healthy controls and to compare child-self and parent-proxy scores. The Turkish versions of the Kinder Lebensqualität Fragebogen (KINDL(R)) questionnaires were used as a QoL measure. The study group consisted of 211 children and adolescents with chronic kidney disease (CKD) (139 TR and 72 DP aged between 4-18 years; 13.7 +/- 3.5 years) from 11 university hospitals, 129 parents of these patients, 232 age-matched healthy children and adolescents (aged between 4-18 years; 13.1+/-3.5 years) and 156 of their parents. Patients with CKD had lower scores in all subscales except for physical well-being than those in the control group. TR had higher scores in physical well-being, self-esteem, friends' subscales, and total scores than DP. Child-self scores were lower than parent-proxy scores, especially in CKD, DP, and control groups. Concordance between parent-proxy and child-self reports in the TR, DP, CKD, and control groups was only moderate for the majority of subscales (r = 0.41-0.61). It was concluded that parent-proxy scores on the QoL were not equivalent to child-self scores and that evaluating both children's and parents' perspectives were important. Additionally, psychosocial counseling is crucial not only for patients with CKD but also for their parents.
authors.affiliation: Department of Pediatric Nephrology, Gazi University, School of Medicine, Besevler, Ankara, Turkey. nbuyan@gazi.edu.tr
authors.forename: Necla
authors.initials: N
authors.lastname: Buyan
authors.forename: Mehmet Atilla
authors.initials: MA
authors.lastname: Türkmen
authors.forename: Ilmay
authors.initials: I
authors.lastname: Bilge
authors.forename: Esra
authors.initials: E
authors.lastname: Baskin
authors.forename: Mehmet
authors.initials: M
authors.lastname: Haberal
authors.forename: Yelda
authors.initials: Y
authors.lastname: Bilginer
authors.forename: Sevgi
authors.initials: S
authors.lastname: Mir
authors.forename: Sevinç
authors.initials: S
authors.lastname: Emre
authors.forename: Sema
authors.initials: S
authors.lastname: Akman
authors.forename: Ozan
authors.initials: O
authors.lastname: Ozkaya
authors.forename: Kibriya
authors.initials: K
authors.lastname: Fidan
authors.forename: Harika
authors.initials: H
authors.lastname: Alpay
authors.forename: Salih
authors.initials: S
authors.lastname: Kavukcu
authors.forename: Lale
authors.initials: L
authors.lastname: Sever
authors.forename: Zeynep Birsin
authors.initials: ZB
authors.lastname: Ozçakar
authors.forename: Nahide
authors.initials: N
authors.lastname: Dogrucan
mesh_terms: D000293:Adolescent; D016022:Case-Control Studies; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D007676:Kidney Failure, Chronic; D008297:Male; D015337:Multicenter Studies as Topic; D010290:Parents / Q000523:psychology*; D010372:Pediatrics; D019727:Proxy; D011788:Quality of Life; D051436:Renal Insufficiency, Chronic; D012649:Self Concept; D011795:Surveys and Questionnaires; D014421:Turkey
references.citation: Health Qual Life Outcomes. 2008 May 19;6:34
references.pmid: 18489777
references.citation: Pediatr Transplant. 2004 Apr;8(2):120-5
references.pmid: 15049791
references.citation: Int J Obes Relat Metab Disord. 2001 May;25 Suppl 1:S63-5
references.pmid: 11466592
references.citation: Rheumatology (Oxford). 2009 Jun;48(6):670-2
references.pmid: 19336577
references.citation: Pediatr Nephrol. 2004 Nov;19(11):1262-6
references.pmid: 15368119
references.citation: Psychooncology. 2006 Jan;15(1):31-43
references.pmid: 15751002
references.citation: Pediatrics. 2009 Mar;123(3):e446-52
references.pmid: 19254981
references.citation: J Pediatr Psychol. 2002 Jan-Feb;27(1):5-18
references.pmid: 11726675
references.citation: Qual Life Res. 1998 Jul;7(5):399-407
references.pmid: 9691720
references.citation: Nephrol Dial Transplant. 2003 Feb;18(2):310-7
references.pmid: 12543886
references.citation: Pediatr Nephrol. 2009 Aug;24(8):1561-8
references.pmid: 19475433
references.citation: Am J Kidney Dis. 2008 Feb;51(2):285-97
references.pmid: 18215706
references.citation: Allergol Int. 2009 Jun;58(2):187-92
references.pmid: 19240375
references.citation: Pediatr Nephrol. 2009 Aug;24(8):1553-60
references.pmid: 19421787
references.citation: Int J Obes (Lond). 2007 Jan;31(1):39-44
references.pmid: 16733522
references.citation: Eur J Oncol Nurs. 2008 Jul;12(3):209-16
references.pmid: 18295541
references.citation: Qual Life Res. 2008 Jun;17(5):701-13
references.pmid: 18437531
references.citation: Soc Sci Med. 1995 Nov;41(10):1403-9
references.pmid: 8560308
references.citation: Pediatr Nephrol. 2006 Jun;21(6):846-50
references.pmid: 16703376
references.citation: Qual Life Res. 1998 Jul;7(5):387-97
references.pmid: 9691719
references.citation: Community Dent Oral Epidemiol. 2007 Aug;35 Suppl 1:32-40
references.pmid: 17615048
references.citation: Eur J Pediatr. 2005 Aug;164(8):491-6
references.pmid: 15875213
references.citation: Pediatr Nephrol. 2008 Aug;23(8):1347-54
references.pmid: 18386069
references.citation: Pediatr Nephrol. 2006 Apr;21(4):538-44
references.pmid: 16511685
references.citation: Turk Psikiyatri Derg. 2008 Winter;19(4):409-17
references.pmid: 19110983
references.citation: Pediatr Nephrol. 2009 Mar;24(3):463-74
references.pmid: 18214549
references.citation: Pediatr Transplant. 2003 Jun;7(3):228-35
references.pmid: 12756049
references.citation: Nephrol Dial Transplant. 2006 Jul;21(7):1899-905
references.pmid: 16611686