Health, lifestyle, and quality of life for young adults born very preterm.(Original Article)

Background: Children born very preterm and able to attend mainstream schools have been shown to have a high prevalence of behavioural, minor motor, and learning difficulties. It is not clear whether these problems persist into adulthood, impacting on lifestyle and quality of life.

Methods: A previously studied cohort of very low birth weight infants born between 1980 and 1983, together with term classmate controls, were assessed at age 19-22 years using a postal questionnaire. The questionnaire included the SF-36 to assess quality of life, a social activities scale, a lifestyle questionnaire, the Hospital Anxiety and Depression Scale, and questions on current height, weight, health, family structure, and education and occupation.

Results: Of the 138 preterm and 163 term controls in the cohort, 79 preterm and 71 term returned questionnaires. Quality of life was assessed as similar on six of eight domains of the SF-36. Social activities were also similar. Preterms drank less alcohol, used fewer illicit drugs, but smoked as often. Rates for sexual intercourse were similar, although preterms had more children. Preterms were shorter than controls and were less satisfied with their appearance. They were more likely to use a regular prescription medicine. Fewer were or had been in higher education, and some remained unemployed.

Conclusion: The problems experienced by very preterm infants at school appear to influence lifestyle and health, but not perceived quality of life in early adulthood.

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Arch Dis Child 2004;89:201-206. doi: 10.1136/adc.2003.030197

Modern neonatal intensive care has greatly reduced the mortality of very low birth weight (VLBW) infants, although it is recognised that 10-15% of survivors will have a major neurodisability. (1) Those attending mainstream schools, while free of major problems, have been noted to have a high prevalence of minor motor, behavioural, and learning difficulties often associated with visual perception disorder. (2) These problems which first present at junior school, do seem to persist into adolescence, when they are also associated with difficulties in forming relationships and in social functioning. (3) A cohort of VLBW infants born in Liverpool, UK in 1980-83 has been followed at school together with term controls at 6 and 12 years. (3-9) The present study aimed to investigate the impact of the difficulties observed at school on their self perceived health and quality of life in early adult life. Early studies of adults born at VLBW were very optimistic about adult outcomes, (10) but more recent reports from Europe (11-15) and the USA (16) have described more problems. All such very long term follow up studies suffer from biases introduced by initial cohort selection, and by attrition. Most are hospital based cohorts, and many have been selected by birth weight rather than gestational age, which increases the proportion of growth restricted infants included. Subjects lost to follow up may be different in many respects such as intelligence, disabilities, and socioeconomic status. (17) (18) Studies usually try to compare variables describing neonatal or early childhood characteristics in the followed up group and those lost to follow up, but this cannot guarantee comparability. Postal questionnaire follow up rather than face-to-face examination also results in further losses.

In view of the difficulties seen in this cohort in early adolescence, it was anticipated that they would show poorer educational attainment and employment status, and less satisfactory personal relationships and satisfaction with their quality of life in early adulthood. Despite the difficulties in follow up it was thought important to ascertain the current status of those in the cohort that could be traced.

METHODS

The study cohort originally comprised two groups of very low birth weight preterm infants born in 1980-81 and 1982-83 at Liverpool Maternity Hospital, Liverpool together with age, sex, and first language matched term classmate controls. Only those able to attend a mainstream school were included. The first group were studied at school at 6 and 8 years, the second at 6 years, and both together at 12 years. When a control did not enter the same secondary school as the preterm subject, a further control was sought and both controls followed. The results of the studies on this combined cohort have been extensively published previously. (3-9)

All term (T) and preterm (PT) subjects in the cohort were contacted by post at their last known address. A letter explaining the study and inviting them to take part was sent, with a single reminder two months later to non-responders. Those returning a prepaid card were sent the questionnaire. Reminder letters were sent to those not returning the questionnaire within a month. The questionnaire was identified only by a study code, and anonymity promised.

The questionnaire comprised the Short Form 36 Health Survey (SF-36), (19) a Social Activities Scale, the Hospital Anxiety and Depression Scale (HADS), (20) and questions on alcohol and drug use, sexual activity, relationships, pregnancy, involvement with the police, current height and weight, self-image, medications, academic achievements, household structure, and employment status. The draft questionnaire was piloted with three young adults and three parents, and minor modifications made. All responses were through tick boxes, except for a free-text section for medications used …