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

BMJ 2001; 323 doi: https://doi.org/10.1136/bmj.323.7324.1276 (Published 01 December 2001) Cite this as: BMJ 2001;323:1276
  1. David Field (dfield{at}uhl.trent.nhs.uk), professor of neonatal medicinea,
  2. Elizabeth S Draper, senior research fellowb,
  3. Melanie J Gompels, research midwifec,
  4. Colin Green, health economistd,
  5. Ann Johnson, developmental paediatriciane,
  6. David Shortland, consultant paediatricianf,
  7. Mitch Blair, senior lecturer in child healthg,
  8. Bradley Manktelow, statisticianb,
  9. Caroline R Lamming, research health visitorb,
  10. Catherine Law, senior lecturerh
  1. a Department of Child Health, University of Leicester Medical School, Leicester LE1 6TP
  2. b Department of Epidemiology and Public Health, University of Leicester Medical School
  3. c Wessex Institute for Health Research and Development, University of Southampton, Southampton SO16 7PX
  4. d Medtap International, London W1Y 1RL
  5. e National Perinatal Epidemiology Unit, Institute of Health Sciences, Oxford 0X3 9DU
  6. f Poole General Hospital, Dorset BH15 2JB
  7. g Imperial College School of Medicine, London SW7 2AZ
  8. h Medical Research Council Environmental Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton SO16 6YD
  1. Correspondence to: D Field
  • Accepted 24 August 2001

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.

What is already known on this topic

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

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

Footnotes

  • Funding NHS Research and Development Programme (Maternal and Child Health). ESD is funded by Leicestershire Health.

  • Competing interests None declared.

  • Accepted 24 August 2001
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