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Quality of life in children with chronic kidney disease (with child and parent assessments)

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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®) 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.

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Acknowledgements

The authors thank Mrs. Patricia Bilikmen for her meticulous proofreading of the manuscript. Thanks also to Ferhunde Öktem Ph.D., Professor of Psychology, Dept. of Child Psychiatry and Bülent Çelik Ph.D., Asst. Prof., Dept. of Biostatistics for their valuable comments on drafts of the manuscript. This study was presented in part at the 5th Congress of the International Pediatric Transplant Association (IPTA) April 18–21, 2009, Istanbul, Turkey.

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Authors and Affiliations

  1. Department of Pediatric Nephrology, Gazi University, School of Medicine, Besevler, 06500, Ankara, Turkey

    Necla Buyan & Kibriya Fidan

  2. Department of Pediatric Nephrology, Dokuz Eylül University, İzmir, Turkey

    Mehmet Atilla Türkmen & Salih Kavukcu

  3. Department of Pediatric Nephrology, İstanbul University, İstanbul Medical School, İstanbul, Turkey

    Ilmay Bilge & Sevinç Emre

  4. Department of Pediatric Nephrology, Başkent University, Ankara, Turkey

    Esra Baskin

  5. Department of Surgery, Başkent University, Ankara, Turkey

    Mehmet Haberal

  6. Department of Pediatric Nephrology, Hacettepe University, Ankara, Turkey

    Yelda Bilginer

  7. Department of Pediatric Nephrology, Ege University, İzmir, Turkey

    Sevgi Mir

  8. Department of Pediatric Nephrology, Akdeniz University, Antalya, Turkey

    Sema Akman

  9. Department of Pediatric Nephrology, Ondokuz Mayıs University, Samsun, Turkey

    Ozan Ozkaya

  10. Department of Pediatric Nephrology, Marmara University, İstanbul, Turkey

    Harika Alpay

  11. Department of Pediatric Nephrology, İstanbul University, Cerrahpasa Medical School, İstanbul, Turkey

    Lale Sever

  12. Department of Pediatric Nephrology, Ankara University, Ankara, Turkey

    Zeynep Birsin Özçakar

  13. Gazi Hospital, Gazi University, Ankara, Turkey

    Nahide Dogrucan

Authors
  1. Necla Buyan
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  2. Mehmet Atilla Türkmen
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  3. Ilmay Bilge
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  4. Esra Baskin
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  7. Sevgi Mir
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  8. Sevinç Emre
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  9. Sema Akman
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  12. Harika Alpay
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  13. Salih Kavukcu
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  14. Lale Sever
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  15. Zeynep Birsin Özçakar
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  16. Nahide Dogrucan
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Correspondence to Necla Buyan.

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Buyan, N., Türkmen, M.A., Bilge, I. et al. Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatr Nephrol 25, 1487–1496 (2010). https://doi.org/10.1007/s00467-010-1486-1

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  • DOI: https://doi.org/10.1007/s00467-010-1486-1

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