Background Few studies have assessed quality of life (QoL) for children born with major congenital anomalies.
Aim To review studies reporting QoL in children and adults born with congenital gastro-intestinal anomalies requiring neonatal surgery.
Methods Literature search, development of the research protocol and data extraction were performed according to standard systematic review methodology.1 We restricted our review to studies published in English from 1990 to 2010, using validated instruments for assessment of QoL in children and adults born with congenital diaphragmatic hernia, oesophageal atresia or abdominal wall defects.
Results 49 papers were excluded based on abstract review. 32 papers were reviewed of which 18 (9 in children/adolescents; 9 in adults) were included. All studies measured health-related QoL, none measured subjective wellbeing. Instruments used to assess health-related QoL in children varied considerably, while there was more consistency in adults with most studies using SF-36. Many studies had major methodological flaws, for example, single institution, retrospective cohorts, low sample size, and/or low follow-up rates. There was substantial age variation (children 1–15 years, adults 16–58 years). Higher quality papers were from Northern Europe (Netherlands, Finland, Norway). Data from the included studies suggest that QoL of children with these anomalies changes during the life-course and by adulthood, is comparable with that of the general population.
Conclusion The reviewed studies consider health status and functioning as a major determinant of QoL. Current concepts of QoL suggest this may be misleading. Further studies need to include age-adjusted, validated instruments to measure QoL throughout the life-course.
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