Data collection from very low birthweight infants in a geographical region: Methods, costs, and trends in mortality, admission rates, and resource utilisation over a five-year period☆
Introduction
In 1993 following national calls in the UK for neonatal follow-up programmes, [1] the neonatal units within the East Anglian Region collaborated to collect population-based data. Many follow-up studies collect data on survivors from tertiary centres alone and are not therefore representative of a complete geographical population [2], [3], [4]. We wished to collect recent clinical data on outcomes in a regional VLBW population. This information was used to identify patterns and trends from a larger population than that collected by single unit and to provide information for counselling parents. We describe the methods used to collect and analyse the data and discuss problems encountered. Data on neurodevelopmental outcomes at two years will be described elsewhere.
Section snippets
Patients and methods
Each of the neonatal intensive care units in the East Anglian region participated. In 1993, one was located in a teaching hospital, three in large district general hospitals (> 3500 deliveries per year) and four in small district general hospitals (< 3500 deliveries per year). In total the units deal with approximately 25,000 births each year including around 250 VLBW babies per year. The National census of 2001, documented the population of the East Anglian region as approximately two and a half
Births
Over the five-year period 1 January 1993 through to 31 December 1997, OPCS recorded 1297 VLBW infants born in the East Anglian Region. Table 1 shows the number of VLBW babies who died during labour, those that died in delivery rooms without admission, and those admitted for intensive care each year (range 236–267). The proportion of babies born below 1500 g remained stable at around 1% of the total births, with a non-significant increase in 1996 and 1997. Estimated ascertainment of very low
Discussion
This study describes a standardised method of data collection to determine the mortality and morbidity of VLBW infants across a geographical region: East Anglia in the United Kingdom. These data were collated and published on a yearly basis, providing information to inform clinicians and the parents of VLBW infants. Local consultants provided follow up and examination of the entire cohort to the age of 2 years as this was an agreed standard of clinical care within the region for VLBW infants.
Implications
Useful data can be collected in a cost effective manner to inform clinicians, parents and managers. Given its importance, Commissioners of Health Care Services should be encouraged to identify appropriate funding for such data collection and analysis as part of the development of managed clinical networks [19].
Acknowledgements
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 was added at a later date.
We gratefully acknowledge the contribution of Gillian Gandy, Colin Morley and Janet Rennie, Carol Hay of CEMACH and the members of the VLBW project group: John Chapman, Hilary Dixon, Elizabeth Dryburgh, Julian Eason, Miranda East, Ian Evans, Matthew James, Gillian Lister, Richard Miles, Kevin
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Cited by (0)
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On behalf of the East Anglian Very Low Birthweight Project.