Quality of life of individuals born preterm: a systematic review of assessment approaches.

Purpose: To review the existing literature regarding factors associated with quality of life (QoL) of individuals who were born preterm. The review focuses on assessment approaches and information sources.

Methods: A systematic review of empirical studies published in PubMed, PsycARTICLES, PsycINFO, LILACS, and SciELO databases between 2007 and 2015. Search terms were chosen that relate preterm birth to QoL.

Results: Twenty-two articles were included. Of these, ten investigated QoL in children, six investigated adolescents, and six investigated adults. All studies used generic instruments to assess QoL. There was a high rate of parental report to assess QoL in studies of children. Adolescent and adult studies most often assessed QoL through self-report. Parents of children who were born preterm reported worse QoL for their children compared with parents of children born full term. Teenagers and adults who were born preterm self-reported more positive outcomes in their QoL. The main risk factors associated with worse QoL in children who were born preterm were congenital malformations, mechanical ventilation during the neonatal phase, cognitive impairments, behavioral problems, physical disabilities, low family income, and black race.

Conclusions: Agreement between parents and children about QoL in preterm individuals was lower in younger age groups compared with older age groups. The differences in QoL throughout the different age groups may have arisen because of developmental changes or differences in the source of information used (i.e., parent report or self-report). We recommend that QoL assessments in children born preterm should consider both parent report and self-report.