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Measuring later health status of high risk infants: randomised comparison of two simple methods of data collection
D Field1, E S Draper, M J Gompels
1University of Leicester Medical School, Leicester, UK. dfield@uhl.trent.nhs.uk
Insights
Neither parent questionnaires nor routine health data fully capture the long-term health of neonatal intensive care survivors. Both methods show potential but require improvement for comprehensive follow-up of preterm infants.
Area of Science:
- Neonatal intensive care outcomes
- Pediatric health surveillance
- Longitudinal study design
Background:
- Neonatal intensive care survivors require ongoing health monitoring.
- Effective, low-cost follow-up methods are needed for this vulnerable population.
- Current follow-up strategies may not capture complete health status.
Purpose of the Study:
- To compare the effectiveness of parent questionnaires versus routine health data collection for assessing the health status of preterm infants at two years of age.
- To identify challenges and potential improvements for low-cost follow-up of neonatal intensive care survivors.
Main Methods:
- A cluster randomized comparison was conducted across nine UK hospitals.
- Infants born at <=32 weeks gestation were recruited.
- Two follow-up methods were compared: parent-completed questionnaires and community clerk-led data collection using routine sources.
Main Results:
- High response rates were achieved for both methods (parents: 91%, clerks: 95%).
- However, completion rates for usable data were lower (parents: 85%, clerks: 67%).
- Parents struggled with "corrected age," and clerks faced issues with outdated or unclear routine data.
Conclusions:
- Neither parent questionnaires nor routine health data alone provide adequate follow-up information for preterm infants.
- Both methods demonstrate potential but require refinement to overcome identified limitations.
- Improved strategies are necessary for comprehensive health surveillance of neonatal intensive care survivors.
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
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.
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