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

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.