Measuring later health status of high risk infants: randomised comparison of two simple methods of data collection

Objective: To test two methods of providing low cost information on the later health status of survivors of neonatal intensive care.Design: Cluster randomised comparison.Setting: Nine hospitals distributed across two UK health regions. Each hospital was randomised to use one of two methods of follow up.Participants: All infants born =<32 weeks' gestation during 1997 in the study hospitals.Method: Families were recruited at the time of discharge. In one method of follow up families were asked to complete a questionnaire about their child's health at the age of 2 years (corrected for gestation). In the other method the children's progress was followed by clerks in the local community child health department by using sources of routine information.Results: 236 infants were recruited to each method of follow up. Questionnaires were returned by 214 parents (91%; 95% confidence interval 84% to 97%) and 223 clerks (95%; 86% to 100%). Completed questionnaires were returned by 201 parents (85%; 76% to 94%) and 158 clerks (67%; 43% to 91%). Most parents found the forms easy to complete, but some had trouble understanding the concept of "corrected age" and hence when to return the form. Community clerks often had to rely on information that was out of date and difficult to interpret.Conclusion: Neither questionnaires from parents nor routinely collected health data are adequate methods of providing complete follow up data on children who were born preterm and required neonatal intensive care, though both methods show potential.What is already known on this topic: Outcome of neonatal intensive care should include later health status not just early mortality. Although these data are commonly sought, for various reasons no existing routine system currently delivers the information for >= 95% of the population (95% representing the minimum acceptable standard). Running one-off studies to gain later follow up data is difficult and costly.What this study adds: Potentially these data could come from parents but to reach 95% ascertainment perhaps 5-10% of parents would require help and support to provide information. Existing data flows may be able to provide the required information if the timing of routine reviews and methods of data recording were harmonised across the United Kingdom. The costs attached to introducing such a system seem to be low