Title: The hidden risks of preterm birth: How should we follow-up vulnerable babies?
Funder: Department of Health (England)

Abstract: Background Evidence currently accumulating shows late and moderate preterm (LMPT; 32-36 weeks gestation) babies to be at increased risk of developmental problems, compared with term babies. Historically regarded as low risk, they are not currently followed up but there are now calls for routine surveillance. Early identification of developmental problems allows timely referral to specialist services to optimise children’s outcomes. Delayed diagnosis incurs a large burden of healthcare for families and society and the need for later costly remediation. Follow-up is regarded as the standard of care in babies born Aims We aim to identify an effective, cost-effective and acceptable approach to routine follow-up for LMPT babies to identify developmental problems and reduce their long-term impact. We will 1.Assess clinical utility of the Parent Report of Children's Abilities Revised (PARCA-R) as a screening tool to identify LMPT infants with developmental delay at 2 years. 2.Explore acceptability to parents of face-to-face consultation and postal questionnaire as follow-up methods. 3.Evaluate cost-effectiveness of postal questionnaire compared with formal developmental test for 2-year follow-up of LMPT babies. 4.Identify and explore other potential methods to improve parents’ and children’s experiences, overcome barriers to participation in follow-up and enhance engagement with developmental surveillance. Plan of Investigation This study comprises 3 parallel work packages 1. At 2 years, parents will complete the PARCA-R questionnaire and children will undergo a formal developmental test using the Bayley Scales of Infant and Toddler Development III (Bayley-III). Results will be compared to determine the cut-off point on the PARCA-R that most accurately identifies children with developmental, cognitive or language delays in the LMPT population. 2. A purposive sub-sample of parents from diverse backgrounds will be interviewed to explore their views on acceptability of follow-up methods and barriers to successful participation in follow-up. 3. A health economic assessment will be conducted to determine the cost-effectiveness for parents and the NHS of follow-up by parental questionnaire compared with other methods. Potential Impact There is an unmet need for follow-up of LMPT babies, consistently highlighted by recent reports of their increased long-term health and developmental risks. In this group, which accounts for 6-7% of all births, the risk of later cognitive and behavioural problems is two to three times that of term babies. Without routine surveillance, early manifestations of these problems may go unrecognised until school age. Effective, acceptable and cost-effective follow-up in this large group of babies will allow timely referral to pre-school health, psychological, and family support services currently inaccessible to these babies. This would reduce the high long-term personal, family and societal burden caused by undiagnosed health and developmental problems and educational needs.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.2 HEALTH AND WELFARE ECONOMICS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH