Health-related quality of life in very and extremely preterm born children at the age of five years



A European study with more than 3600 participants measured how health-related quality of life in children at the age of five is affected by extreme and very preterm birth. The results show that quality of life is particularly lower in extremely preterm born children.

Compared to children who are born at term, preterm born children often have a higher risk of mortality and developing serious complications. Children who are born before 28 weeks of gestation are defined by WHO as extremely preterm, those who are born before 32 weeks of gestation as very preterm. Common conditions are bronchopulmonary dysplasia (BPD), which is a chronic breathing disorder, necrotising enterocolitis, a serious gastrointestinal issue or retinopathy of prematurity (ROP), an eye disorder. Up to one-third of children who are born very or extremely preterm and their families are confronted with challenges concerning their health, education and dependence, throughout their lives.

To show the effects of very and extremely preterm birth on a physical, mental and social level for children and their families, researchers assessed the health-related quality of life in 3687 children in 11 European countries (Belgium, Denmark, Estonia, France, Germany, Italy, the Netherland, Poland, Portugal, the United Kingdom, Sweden) at the age of five years.

Health-related quality of life was measured using the PedsQL™ 4.0 Generic Core Scales, a frequently used, validated questionnaire, which was answered by the children’s parents. The survey included questions on the physical, emotional, social and school/daycare functioning. Effects of BPD and other conditions related to preterm birth were also included in the analysis.

The results of the study show that children who were born before 26 weeks of gestation had considerably lower health-related quality of life. For example, when comparing very and extremely preterm born children, physical functioning was lower in extremely preterm born children. Very preterm born children who did not experience BPD or other non-respiratory conditions had a significantly better health-related quality of life. This also shows that BPD and non-respiratory conditions have an additional negative impact on quality of life.

These results underline the complex consequences of preterm birth for the children themselves and their families. Further research is needed to find out more about the possible prevention and effects of preterm birth.

Data for this study were part of the EPICE (Effective Perinatal Intensive care in Europe) cohort study and SHIPS (Screening to improve Health In very Preterm InfantS in Europe), which is the follow-up study of EPICE. EFCNI is proud to have been involved as a project partner and to have co-authored this paper as part of the SHIPS Research Group. Further information can be found on our project website:


Paper available at: Springer

Full list of authors: Sung Wook Kim, Lazaros Andronis, Anna‑Veera Seppänen, Adrien M. Aubert, Henrique Barros, Elizabeth S. Draper, Mariane Sentenac, Jennifer Zeitlin, Stavros Petrou, On Behalf of the SHIPS Research Group