Background There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in young children. This study aimed to analyse self-reported QoL in children aged <12 years with a chronic health condition of perinatal origin, 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. Original studies were included if they: (1) assessed QoL of children with a distinct chronic health condition of perinatal origin, i.e. either a congenital condition or anomaly, or a condition resulting from events during pregnancy or in the neonatal period; (2) had self-reported data on children aged <12 years; (3) used validated generic or condition-specific QoL instruments; (4) published in English between January 1989 and June 2013. Each eligible study underwent a detailed review by two independent reviewers who extracted data on study design, objective, sample characteristics, QoL assessment instrument, statistical techniques used and the results. Study quality assessment was conducted by the reviewers who evaluated recruitment (avoidance of selection and non-response bias), study design (course of measurement, informants and type of controls), QoL assessment (whether validated instruments were used), and the statistical analyses (adjustment for confounders. Due to the varied QoL measurements and summary measures, the results were synthesised narratively.

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.

Conclusion This review suggests that young children with perinatal conditions often have similar self-reported QoL compared with age-matched controls. As their perception of QoL frequently differs from that of their parents, both child and parent perspectives are essential to understand the impact of the condition on a child’s QoL and on the family as a whole.

Acknowledgments This abstract was first presented as a poster at Perinatal Medicine 2014, 9–11 June 2014, Harrogate International Centre, Harrogate, UK, and published as:

Rankin J, Jardine J, Glinianaia SV, McConachie H, Embleton ND. Self-reported quality of life in children aged less than 12 years with chronic health conditions of perinatal origin: a systematic review. Archives of Disease in Childhood Fetal and Neonatal Ed. 99(Suppl 1):A39. 2014.