Introduction: We aimed to assess health related quality of life (HRQoL) in children with chronic kidney disease (CKD) or a kid-ney transplant (CKD-T) from the perspective of their parents (proxy ratings). Additionally, the parental life satisfaction was evaluated aswell as its possible associations with HRQoL of their children.

Material and methods: Sixty parents to children with CKD stage 3–5 or CKD-T participated. HRQoL in children was assessed by parent proxy versions of the generic instruments Kidscreen-27 and Disabkids-37. Parents own life satisfaction was measured by self-reported LiSat-11 questionnaire.

Results: In most areas parent proxy ratings were significantly lower thanratings by the children themselves. Female sex and older age were associated with lower HRQoL. Compared with proxy ratings by parents to children in the general population, proxy ratings of HRQoL in children with CKD and CKD-T were significantly lower in the domains Physical Well-being, Psychological Well-being, Social inclusion, Social exclusion, and in overall score. Compared with general population, parents in the study rated their own life satisfaction lower in the domains Life as a whole, Leisure and Contacts. Mothers’ life satisfaction were lower than  fathers’in domains Life as a whole and Leisure.

Conclusions: The agreement between parent and child reports of HRQoL was generally poor. Parent ratings of HRQoL in children with CKD seemed to correlate with parents own life satisfaction. The differences between parent and child ratings should be considered in clinical practice.