title: Self-reported quality of life of young children with conditions from early infancy: a systematic review.
abstract: BACKGROUND
  There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in young children.
  
  
  OBJECTIVE
  To systematically review studies of self-reported QoL in children aged <12 years with congenital health conditions, and to examine the agreement between self- and proxy-reports.
  
  
  METHODS
  Literature databases (MEDLINE, EMBASE, Web of Science, PsychINFO) were systematically searched, reference lists of eligible studies were scanned.
  
  
  METHODS
  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 congenital health condition identified in early infancy.
  
  
  METHODS
  We extracted data on study design, objective, sample characteristics, QoL assessment instrument, statistical techniques and results.
  
  
  RESULTS
  From 403 full-text articles assessed for eligibility, 50 studies underwent detailed review, and 37 were included in a narrative synthesis. Children's self-reported QoL was assessed by using a variety of generic and/or condition-specific instruments, with the Pediatric Quality of Life Inventory being the most frequently used (25% [9 studies]). Regardless 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 according to QoL domain. The child's perception of QoL differed from that of his or her parents, in particular for subjective domains such as emotional functioning, and these differences were age related. The main limitation of the review resulted from the lack of published studies on self-reported QoL in young children, in particular, lacking both self-reports and proxy reports. Existing studies demonstrated wide variability in the QoL instruments used and approaches to statistical analyses, lack of information about the formation of the study sample (response rate; comparison of responders and nonresponders) and low sample sizes in the age group of interest.
  
  
  CONCLUSIONS
  The reviewed studies demonstrated that, even for younger children, both child and parent perspectives are essential to understanding the impact of a condition on a child's QoL.
authors.affiliation: Central Manchester University Hospitals NHS Foundation Trust, Salford Child and Adolescent Mental Health Service, Manchester, United Kingdom;
authors.forename: Jenni
authors.initials: J
authors.lastname: Jardine
authors.affiliation: Institute of Health & Society, Newcastle University, Newcastle upon Tyne, United Kingdom; and.
authors.forename: Svetlana V
authors.initials: SV
authors.lastname: Glinianaia
authors.affiliation: Institute of Health & Society, Newcastle University, Newcastle upon Tyne, United Kingdom; and.
authors.forename: Helen
authors.initials: H
authors.lastname: McConachie
authors.affiliation: Institute of Health & Society, Newcastle University, Newcastle upon Tyne, United Kingdom; and Newcastle Hospitals NHS Foundation Trust, Newcastle Neonatal Service, Newcastle upon Tyne, United Kingdom.
authors.forename: Nicolas D
authors.initials: ND
authors.lastname: Embleton
authors.affiliation: Institute of Health & Society, Newcastle University, Newcastle upon Tyne, United Kingdom; and judith.rankin@ncl.ac.uk.
authors.forename: Judith
authors.initials: J
authors.lastname: Rankin
mesh_terms: D002648:Child; D002675:Child, Preschool; D000013:Congenital Abnormalities / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D019727:Proxy / Q000523:psychology; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report / Q000592:standards
keywords: child’s self-report; congenital conditions; quality of life; self-proxy agreement; systematic review