Quality of Life Research

, Volume 26, Issue 9, pp 2409–2419 | Cite as

Measurement of quality of life and attitudes towards illness in children and young people with chronic kidney disease

  • Jennifer Heath
  • Paul Norman
  • Martin Christian
  • Alan Watson
Article
First Online:
Accepted:

Abstract

Purpose

Chronic kidney disease (CKD) can place restrictions upon biopsychosocial development in children; consequently, assessment of self-reported quality of life (QoL) is important in patient evaluations. This research aimed to evaluate a generic and renal-specific self-report QoL scale, assess children’s attitudes towards living with CKD and propose an appropriate tool for future individual clinical use or departmental audit.

Methods

Seventy-one children (41 male, 30 female; mean age = 13.60 years, range = 6.00–18.96) with CKD completed the Generic Children’s QoL Measure (GCQ), PedsQL 3.0 End Stage Renal Disease Module (PedsQL) and Child Attitude Toward Illness Scale (CATIS). Descriptive and cross-sectional analyses were performed, along with an examination of associations between scores on each measure.

Results

The mean GCQ score for patients was comparable with normative data (p = 0.27). Generic QoL, disease-specific QoL and attitudes towards CKD did not vary by CKD stage, age, time since diagnosis or duration of current treatment. Gender was not associated with QoL, although males had more negative CATIS scores than females (p < 0.05). Pre-emptive transplant patients had more positive GCQ and PedsQL scores (p < 0.05 for each), but there was no relationship between treatment and CATIS scores. Scores on all scales were moderately correlated (r = 0.35–0.59), suggesting that clinicians may choose the most appropriate measure for assessment of psychological/psychosocial functioning based on clinical judgement.

Conclusions

This study further confirmed that using child self-reported QoL measures is possible and may help psychosocial teams to individualise work. The GCQ is simple and convenient, and could be used as an annual screening tool to facilitate discussion of QoL with children and young people. Further work is necessary before such things as cut-off scores can be recommended.

Keywords

Psychological adaptation Screening Annual review 
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Notes

Acknowledgements

Thank you to the children, young people and parents involved, and also to the renal team at Nottingham Children’s Hospital for being so supportive of the research.

Funding

This study received no funding. It was a piece of research conducted as part of a doctoral qualification.

Compliance with ethical standards

Conflict of interest

Authors Jennifer Heath and Paul Norman declare that they have no conflicts of interest. Authors Martin Christian and Alan Watson were employed within the trust in which the research took place.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Copyright information

© Springer International Publishing Switzerland 2017

Authors and Affiliations

  1. 1.Clinical Psychology Unit, Department of PsychologyUniversity of SheffieldSheffieldUK
  2. 2.Nottingham Children’s HospitalNottingham University Hospitals NHS TrustNottinghamUK

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