Background There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in children aged <12 years.

Objective To study self-reported QoL in children aged <12 years with a chronic perinatal condition, and to examine the agreement between self- and proxy-reports for these children.

Methods We used systematic review methods for literature searches (MEDLINE, EMBASE, Web of Science, PsychINFO), development of the data extraction protocol and the review process. We included studies published in English between January 1989 and June 2013 which used validated instruments to assess self-reported QoL in children aged <12 years with a distinct chronic health condition of perinatal origin.

Results From 403 full-text papers assessed for eligibility, 50 studies underwent detailed review and 37 were included in a narrative synthesis. Children’s self-reported QoL was assessed using a variety of generic and/or condition-specific instruments, with the Paediatric Quality of Life Inventory being the most frequently used (25%, nine studies). Irrespective of the condition or the instrument used, children often reported QoL similar to the reference population, except for lower scores in the physical functioning/health domain. There were differences between younger and older age groups by QoL domain. The child’s perception of QoL differed from that of their parents, in particular for subjective domains, such as emotional functioning, and these differences were age-related.

Conclusions The reviewed studies demonstrated that, even for younger children, both child and parent perspectives are essential to understand the impact of a condition on a child’s QoL.