A systematic review of studies of quality of life in children and adults with selected congenital anomalies

Abstract

The reviewed studies considered health status and functioning as a major determinant of QOL. More studies assessing QOL in patients with major congenital anomalies are needed, and those involving children should use age-adjusted, validated instruments to measure both health-related QOL and self-reported subjective wellbeing.

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

“…1 We observed a lack of consistency in the reviewed studies in relation to QoL in children with congenital conditions, with some reporting comparable 36,38,39 or even better 40 subjective QoL than control children, whereas others reported lower total or domain-specific scores. This inconsistency cannot be fully attributed to the type of condition, QoL measure used, or age differences, as some studies explored children of the same age groups with the same condition using the same instrument but reported discrepant findings.…”

“…Studies were identified through comprehensive literature searches of OVID Medline, Embase, Web of Science, PsychINFO, and the Cochrane Database of Systematic Reviews. Databases were searched from January 1,1989, to June 30, 2013; the Convention on the Rights of the Child was published in 1989, 22 and it was believed that recognition for respecting the views of the child would have generated increased research for this age group. Relevant gray literature was identified by searching the NHS Evidence Database (http://evidence.nhs.uk/) and Turning Research Into Practice database (http://www.tripdatabase.com/).…”

“…Original studies were included if they: (1) assessed QoL of children with a distinct health condition arising in early infancy, including a congenital disease (eg, hemophilia), a structural anomaly (eg, spina bifida), or a condition resulting from events during pregnancy or in the neonatal period (eg, cerebral palsy) (for brevity, the phrase "congenital conditions" is used for the rest of the article); (2) had self-reported data on children aged ,12 years; (3) used validated generic or condition-specific QoL instruments; and (4) were published in English between January 1989 and June 2013. Studies reporting QoL in children with a diverse or mixed group of conditions of different origin were not included (eg, children with special heath care needs, 23 variety of primary chronic pain conditions 24 ).…”

“…The 50 studies for review were divided between 4 second reviewers by using a data extraction protocol based on a previous review. 1 This method was piloted and refined before commencing the data extraction process. Articles that did not meet the inclusion criteria were excluded during the review process, resulting in 37 eligible studies (Fig 1).…”

“…[1][2][3][4] QoL is a multidimensional concept, inherently subjective, in which the self-report element for all individuals, including children, is important. 5,6 Although it is well recognized in industrialized countries that ascertaining children' s views of their QoL is essential for improving health care strategies, assessment of subjective well-being in children is still not common in the United States and the United Kingdom.…”