Background Routine comparable outcome data collection relating to the later health status of babies born very preterm has long been considered important, but has not been achieved in the UK.
Aim To test the potential for a parental questionnaire to provide these data for all eligible babies from a geographical population.
Methods Consent for follow-up by questionnaire (using the Parent Report of Children's Abilities-Revised combined with questions derived from the Oxford minimum dataset) was sought for all babies ≤30 weeks of gestation, discharged from a hospital in the East Midlands and Yorkshire regions of the UK, having been born between 1 January 2007 and 31 December 2011.
Results The rate of consent to participate in follow-up showed a steady increase over time to 83.1% in 2011. However, the response rate in terms of completion and return of the questionnaire at 2 years, as a proportion of those eligible, showed little change over time, varying between 42% and 46%. Among those children where a questionnaire was returned, the rate of disability was broadly consistent over time: lowest in 2009, 21.0% (95% CI 16.8% to 25.6%) and highest in 2011, 25.5% (95% CI 21.5% to 31.2%). The instruments used appeared effective with the capability of discriminating between children with physical and/or cognitive disability.
Conclusions The overall response rate in terms of returned questionnaires was disappointing and inadequate to recommend for implementation. It is possible that response rates would have been higher had clinical follow-up been linked to the data obtained from the questionnaires rather than running as a parallel process.
- Outcomes research
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