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Self-reported quality of life in children and young people with chronic kidney disease

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Abstract

Chronic kidney disease (CKD) would be expected to impact upon the quality of life (QoL) of children and young people; therefore, it is important that they are given the means to express their opinions about how they perceive their own QoL. We used the Generic Children’s Quality of Life Measure (GCQ) in 225 paediatric renal patients (118 male, mean age 13.6 years, range 6.2–18.9 years) from seven UK centres. Of these, 47 were on dialysis (23 on haemodialysis), 128 were post-transplant (47 pre-emptive) and 49 had advanced CKD. A comparison between the 124 renal patients (65 male, mean age 11.2 years) in the same age range as the general population (6–14 years) showed a higher GCQ QoL score for the renal patients (p = 0.02). Analysis of the whole group of renal patients (n = 225) revealed no significant difference between the mean GCQ scores of participants in various treatment modalities (p = 0.26) and no significant differences between gender (p = 0.90) and age group (p = 0.44). The results indicate that young people can perceive their QoL as good despite living with what others may perceive as severe limitations. This may seem counter-intuitive, but QoL is a subjective measure and thus may be difficult to predict from observable limitations (health status). The GCQ is an ideal measure for use in annual departmental audits of generic paediatric QoL and may help to individualise the work of psychosocial teams with each patient.

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Authors and Affiliations

  1. Children’s Renal & Urology Unit, Nottingham University Hospitals NHS Trust, QMC Campus, Derby Road, Nottingham, NG7 2UH, UK

    Jennifer Heath, Dorothy MacKinlay & Alan R. Watson

  2. Evelina Children’s Hospital, St Thomas’ Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London, UK

    Anna Hames

  3. Royal Victoria Infirmary, Newcastle, UK

    Lucy Wirz

  4. Alder Hey Children’s NHS Foundation Trust, Liverpool, UK

    Sarah Scott

  5. Royal Belfast Hospital for Sick Children, Royal Hospitals NHS Trust, Belfast, UK

    Elaine Klewchuk

  6. Birmingham Children’s Hospital, Birmingham, UK

    David Milford

  7. Royal Hospital for Sick Children, Greater Glasgow & Clyde NHS Trust, Glasgow, UK

    Kathleen McHugh

Authors
  1. Jennifer Heath
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  2. Dorothy MacKinlay
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  3. Alan R. Watson
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  4. Anna Hames
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  5. Lucy Wirz
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  6. Sarah Scott
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  7. Elaine Klewchuk
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  8. David Milford
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  9. Kathleen McHugh
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Correspondence to Alan R. Watson.

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Heath, J., MacKinlay, D., Watson, A.R. et al. Self-reported quality of life in children and young people with chronic kidney disease. Pediatr Nephrol 26, 767–773 (2011). https://doi.org/10.1007/s00467-011-1784-2

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  • DOI: https://doi.org/10.1007/s00467-011-1784-2

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