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

Heath, Jennifer; MacKinlay, Dorothy; Watson, Alan, R.; Hames, Anna; Wirz, Lucy; Scott, Sarah; Klewchuk, Elaine; Milford, David; McHugh, Kathleen

Authors

Jennifer Heath Jennifer3.Heath@uwe.ac.uk

Dorothy MacKinlay

Alan, R. Watson

Anna Hames

Lucy Wirz

Sarah Scott

Elaine Klewchuk

David Milford

Kathleen McHugh



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. © 2011 IPNA.

Journal Article Type Article
Publication Date May 1, 2011
Journal Pediatric Nephrology
Print ISSN 0931-041X
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 26
Issue 5
Pages 767-773
APA6 Citation Watson, A. R., Heath, J., MacKinlay, D., Watson, A. R., Hames, A., Wirz, L., …McHugh, K. (2011). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology, 26(5), 767-773. https://doi.org/10.1007/s00467-011-1784-2
DOI https://doi.org/10.1007/s00467-011-1784-2
Keywords children and young people, chronic kidney disease (CKD), quality of life (QoL), multicentre, generic children’s quality of life measure (GCQ)
Publisher URL http://dx.doi.org/10.1007/s00467-011-1784-2
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