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Health-related quality of life of children and adolescents with CKD stages 4–5 and their caregivers

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Abstract

Background

Renal replacement therapies may affect the quality of life of patients and their primary caregivers (PC).

Methods

This study describes the perception of health-related quality of life (HRQoL) of children/adolescents with CKD stages 4–5, as well as of their PC (n = 64), in comparison to healthy peers and their PC (n = 129), respectively, based on the Peds QL™ 4.0 and Short Form-36 (SF-36) questionnaires and selected biomarkers.

Results

Patients reported a deleterious impact on physical capacity and on social and school activities. A negative influence on emotional aspects was reported by older patients, but not by their PC. Hemodialysis, followed by peritoneal dialysis, had a more negative impact on patients’ physical functioning domain. PC HRQol proxy reports differed from those of their children, especially in older patients. PC of both groups presented similar SF-36 scores. An association was demonstrated between the magnitude of treatment target inadequacies, lower specific dominion scores in the patients/PC proxy reports and PC SF-36 general health scores.

Conclusion

The HRQoL of patients with CKD stages 4–5 is negatively affected to different degrees depending on age and treatment modality. The results suggest an association between worsening HRQoL parameters and inadequate control of recognized therapeutic CKD treatment targets.

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Acknowledgments

This study was conducted with the support of the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES), the Brazilian government department dedicated to training human resources. We thank Dr. J.W. Varni for permission to use the Peds QL questionnaires and the MAPI Institute for their support.

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Authors and Affiliations

  1. Department of Pediatrics, Pediatric Nephrology Unit, Instituto da Criança Hospital das Clinicas of the University of Sao Paulo Medical School, Rua das Mangabeiras 91/81, 01233-010, São Paulo, Brazil

    Marcos Lopes & Vera H. Koch

  2. Department of Pediatrics, Discipline of Preventive Medicine, University of Sao Paulo Medical School, São Paulo, Brazil

    Alexandre Ferraro

Authors
  1. Marcos Lopes
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  2. Alexandre Ferraro
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  3. Vera H. Koch
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Correspondence to Vera H. Koch.

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Lopes, M., Ferraro, A. & Koch, V.H. Health-related quality of life of children and adolescents with CKD stages 4–5 and their caregivers. Pediatr Nephrol 29, 1239–1247 (2014). https://doi.org/10.1007/s00467-014-2769-8

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  • DOI: https://doi.org/10.1007/s00467-014-2769-8

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