The EPICure study analysed the Health-Related Quality of Life (HRQL) in 129 adults born extremely preterm in the UK and Ireland in comparison to adults born at term. It was found that participants born with impairment had the lowest scores for HRQL, followed by those born extremely preterm without impairment, with cognition being the most affected domain. Interestingly, parent-reported HRQL tended to be lower than the self-reported reality.
Since 1990, thanks to advances in neonatal care, survival rates of infants born extremely preterm (<26 weeks of gestation) have improved significantly. Nevertheless, these babies are at greater risk of a wide range of long-term cardiorespiratory, neurologic, cognitive, and psychosocial problems, which can affect their health-related quality of life (HRQL).
Sadly, knowledge about HRQL among adults born extremely preterm is limited. For this reason, a group of researchers decided to examine self-reported and parent-reported HRQL in adults born extremely preterm and compared the findings with control participants born at term. Researchers also aimed to evaluate the trajectories of health status from adolescence to early adulthood.
The researchers designed the EPICure study that comprises all births at <26 weeks of gestation in the United Kingdom and Ireland in 1995 and control participants born at term recruited at age six. 129 children born extremely preterm and 65 control participants were followed up at the 11- and 19- year assessments and were evaluated.
To provide a complete picture of an individual’s HRQL, the impact of health on an individual’s overall well-being was determined. One measure used was the Health Utilities Index Mark 3 (HUI3), which covers eight attributes from normal function (level 1) to severe impairment (level 5-6). Another algorithm synthesised all responses from the HUI3 about the HRQL into an overall Multiattribute Utility (MAU) score ranging from -0.36 (worse than death) to 1.00 (perfect health).
After analysing the group scores (participants born extremely preterm with impairment, participants born extremely preterm without impairment, and controls) using the HUI3 and MAU, no significant differences in age, sex and maternal education were noticed. However, participants born extremely preterm without neurodevelopmental impairment had lower MAU scores at 19 years than controls, indicating less optimal HRQL. Moreover, adults born with impairment had the lowest scores obtaining a MAU of 0.74. Another interesting finding was that participants born extremely preterm with impairment rated their HRQL higher than their parents’ (0.74 vs 0.58). One interpretation could be that parents may compare their child with all peers of the same age, whereas the young adults may compare themselves with their immediate peers who are at the same education or occupational level. Parents’ views may also be influenced by the burden of caregiving as well as their own well-being and concerns.
Lastly, the study provided insight into specific areas of an individual’s life. Cognition, the most frequent domain affected by preterm birth, had the highest MAU-score-difference between participants born extremely preterm without impairment and individuals in the control group. For all participants born extremely preterm, their scores within one or more specific domains, such as vision, hearing, emotion, or pain, significantly declined from adolescence to early adulthood. These changes resulted in an overall MAU score decline and, therefore, a lower HRQL. Additionally, all extremely preterm participants considered quality of speech a highly relevant area for HRQL as well.
Despite other studies coming to different results on the trajectories of health status from adolescence to early adulthood, all of them point to the same conclusion of the eminent impact that extreme prematurity has on the HRQL of young adults.
Paper available at: The Journal of Pediatrics
Full list of authors: Yanyan Ni, Helen O’Reilly, Samantha Johnson, Neil Marlow and Dieter Wolke