Aim To determine the prevalence and nature of disability at 2 years of age in infants born from 1993 to 2002 with a birth weight of <1500 g.
Methods A prospective cohort analysis of all eight neonatal units in East Anglia, UK using a single database. Local paediatricians assessed children at 2 years of age using the Health Status Questionnaire. Data were analysed using SPSS v 9 and MSAccess 97.
Results 97% of the 1850 survivors were assessed at 2 years. 21% had mild disability, 10.8% moderate and 8.6% severe. There was no evidence of an increased rate of disability despite survival rates increasing from 75% in 1993 to 89% in 2002. There was an increased trend in survival of infants of <28 weeks' gestation from 17% to 21% (p=0.08), and the overall rate of moderate to severe disability decreased significantly from 35% to 28% (p<0.01). There was a decreasing trend in the number of infants with cerebral palsy (6% vs 4%). There was also a decrease in the numbers of infants with blindness, hydrocephalus or a hearing impairment. Follow-up rates decreased from 99% to 94.5%. Analysis of those lost to follow-up revealed they were of higher gestation and birth weight.
Conclusion There was no evidence of an increased rate of disability despite improved survival rates over the two time periods. The rate of blindness decreased, probably reflecting earlier treatment of retinopathy of prematurity. This study demonstrates that although follow-up remains a challenge, rates of over 90% are achievable.
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Funding Funding was initially received from regional audit funds; funding from regional research and development and from the Anglia Clinical Audit and Effectiveness Team in Cambridge and the NSC Network were added at a later date.
Competing interests None.
Patient consent Obtained.
Provenance and peer review Not commissioned; externally peer reviewed.