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Aims 1. To determine the survival and morbidity of infants at discharge with a birthweight of less than 1500 g in the geographically defined population of East Anglia. 2. To demonstrate a cost-effective method of regional data collection. 3. To determine whether there were any changes in the demand for neonatal care. Study design and subjects A prospective cohort analysis using a single database to collect data on 1244 very low birthweight infants from eight neonatal units in one Region from 1993 to 1997. Results Estimated ascertainment of VLBW infants to the study was 96%. Over the 5 years survival rates were stable (75–79%). 52% of deaths in infants admitted for neonatal care occurred on day 1, with just 15% of deaths occurring after 28 days of life. Mortality risk significantly decreased with increasing gestational age at birth. Compared to 22–25-week old infants, the mortality risk decreased by 65% for 26–27-week old infants (OR 0.35 95% CI (0.21, 0.59)) and by 92% for 32–39-week old infants (OR 0.08 95% CI (0.03, 0.21)) with intermediate odds ratios of 0.22 (0.12, 0.42) and 0.13 (0.06, 0.28) for the 28–29 and 30–39 weeks gestation, respectively. Higher birthweight, after adjusting for gestation also decreased the mortality risk (OR 0.78 per 100 g difference, 95% CI (0.71, 0.86)). No change was seen in the number of extremely preterm infants admitted for intensive care or resource utilisation, although a significant increase was seen in the number of infants dying in delivery rooms. There was a reduction in the reported incidence of pulmonary interstitial emphysema (10–4%) but no change in the number of ventilation days or the rate of chronic lung disease. The mean maternal age increased from 27.7 years to 28.9 years during the study. Maternal steroid administration increased (30% to 59%) and was associated with a decreased risk of mortality (OR 0.44, 95% CI: 0.31–0.62). Conclusions It is possible to collect useful data from the neonatal period at a reasonable cost from a geographically defined population. This information was used for informing clinicians, counselling parents and in the era of managed clinical networks will be useful in guiding the provision of effective health care resources.

Marked differences are seen in neurological and health status, intellectual functioning, school performance and behaviour between children born prematurely and those born at term. Assessment in later childhood has identified more subtle problems than the severe disability or sensory deficits readily identifiable at two years. These problems include learning disabilities, specific neuropsychological deficits in executive function, difficulties in visual-motor integration and perception, selective language impairment, motor coordination disorders, behaviour problems, attention deficit hyperactivity disorder (ADHD), and reduced educational achievement. Follow-up to school entry and beyond is thus required to determine the true prevalence and nature of the neurodevelopmental problems arising from preterm birth. Consensus about the assessment used, definitions of disability and health status, age of assessment and who undertakes it are necessary and should allow comparison across populations; this may help to maximise outcomes for children clearly at biological risk. Assessment of outcome for children born preterm beyond two years is required for counselling parents, planning health and education provision, for evaluation of services and to facilitate understanding of the longer term effects of preterm birth on brain development.

To determine the type and rate of disability at 2 years of age in infants born in the geographically defined population of East Anglia with a birthweight less than 1500 g and to assess the risk factors for disability.A prospective cohort analysis from all eight neonatal units in East Anglia from 1993-1997 using a single database.Local paediatricians assessed children at 2 years using the Health Status Questionnaire and data collection was centrally coordinated.Outcomes for 947 children, 99% of survivors, were available, 74 (7.8%) had severe disability and this was significantly associated with gestational age (p0.0005), birthweight (p0.0005) and sex (p=0.046). Major congenital abnormality contributed 27% of all severe disability. The overall cerebral palsy rate was 6.2%, nine children were blind and five had sensorineural hearing loss requiring aids. These children had a high level of use of community services with 19% of the cohort being referred to one or more community service. ELBW infants or those born30 weeks gestation were 1.5 times and twice as likely to have moderate or severe disability and 2.3 and 5.4 times as likely to have cerebral palsy as those weighing 1000 to 1500 g or30 weeks gestation. Boys were at higher risk of adverse outcome.The study was able to define the increased risk associated with being born at lower gestational age or lower birthweight and demonstrates successful ascertainment of outcomes for large local populations at a reasonable cost.