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

Abstract

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 Community clerks often had to rely on information that was out of date and difficult to interpret.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.