Evaluation of the use of a parent questionnaire to provide later health status data: the PANDA study

Area of Science:

• Neonatal research
• Pediatric health outcomes
• Public health surveillance

Background:

• Comparable outcome data for very preterm infants' later health is crucial but not routinely collected in the UK.
• Existing methods for collecting this data have proven insufficient for widespread implementation.

Purpose of the Study:

• To evaluate the feasibility of using a parental questionnaire to collect long-term health data for all eligible very preterm infants within a defined geographical population.
• To assess the potential of parental self-report for capturing key developmental and health outcomes in this vulnerable population.

Main Methods:

• A prospective study involving babies born at or before 30 weeks' gestation between 2007 and 2011 in the East Midlands and Yorkshire regions of the UK.
• Parental consent was obtained for follow-up using the Parent Report of Children's Abilities-Revised and Oxford minimum dataset questions at 2 years corrected age.
• Data collection involved postal questionnaires sent to parents of eligible infants.

Main Results:

• Consent rates for follow-up increased steadily, reaching 83.1% by 2011.
• However, the overall response rate (completed and returned questionnaires) remained low and static, between 42% and 46% of eligible infants.
• Among respondents, the prevalence of physical and/or cognitive disability was consistent over time, ranging from 21.0% to 25.5%.
• The chosen instruments demonstrated effectiveness in identifying disabilities.

Conclusions:

• The low overall response rate for returned questionnaires was insufficient to recommend this method for routine implementation.
• Linking questionnaire data with clinical follow-up, rather than a parallel process, might improve response rates.
• Further research is needed to optimize data collection strategies for long-term infant outcomes.