Title: Social, Economic and Ethnic Disparities in the Diagnosis of Developmental Disorders among Children Born Before Full Term
Funder: Department of Health and Social Care

Abstract: Background Every year in England and Wales approximately 52,000 babies are born preterm (+6 weeks), late preterm (34 - 36+6 weeks), and early term (37 - 38+6 weeks), but there is emerging evidence that some of these children are also at risk of developmental disorders. Prompt diagnosis of developmental disorders enables early intervention and improved outcomes, but since 32% of all children are born at 32 - 38 weeks routine follow up for all of these children would be impractical. A more targeted approach needs to be developed. NICE guidelines specify parent-driven referral via GP or health visitor when there are concerns about child development. However, parents' capacity to seek advice may be influenced by their socio-economic or ethnic background. GPs and health visitors act as 'gatekeepers' for investigations but there has been no published research into their understanding of the effects of birth before full term. Aims To determine the prevalence of developmental disorders amongst children born moderately preterm, late preterm, and early term up to the age of 10 To identify any disparities in prevalence of developmental disorders and the experience of healthcare, related to ethnicity and socio-economic group To investigate healthcare professionals' knowledge of the developmental outcomes of children born before full termMethods Secondary analyses of linked data from the 'Born in Bradford' study, primary care data and educational records will be performed. Over 13,500 babies were recruited into the Born in Bradford longitudinal birth cohort study between 2007-2011. A multivariable logistic regression model will include developmental disorder as the primary outcome and gestational age as a continuous exposure. Semi-structured interviews will investigate the perspectives of parents of children born preterm with developmental disorders regarding their experiences of healthcare with respect to their child's development. Purposeful sampling will be performed to obtain variation by gestational age, family composition, ethnicity, and socio-economic status. A questionnaire targeting healthcare professionals referring to community paediatric services will be used to explore knowledge of if and how the effects of birth before full term vary by gestational age, socio-economic status, and ethnicity. Impact and dissemination Public engagement is vital to improving parents' understanding of the developmental sequelae of birth before full term. This will be achieved in collaboration with Born in Bradford, specific social media support groups, and neonatal charities. Parents who participated in the qualitative work will be contacted with the results. The research will generate several peer reviewed publications and presentations. It will impact on antenatal decision-making and counselling. This research will enable enhanced follow-up of children at most risk of developmental disorder, through improved understanding of the barriers to accessing appropriate healthcare and greater awareness amongst healthcare professionals. This should reduce delayed or missed diagnoses, therefore improving outcomes.

Lay abstract: Background A 'full term' pregnancy lasts 40 weeks; this is how the 'due date' is calculated. Babies born more than 3 weeks before their due date (before 37 weeks of pregnancy) are called 'preterm'. Babies born very preterm (before 32 weeks) often need extra care after birth and are at higher risk of problems with their development compared to full term babies. Very preterm children have clinic appointments until they are 2 years old, so any developmental problems are picked up early, which helps them receive the right treatment. Compared to babies born very preterm, there has been much less research into babies born closer to their due date. Babies born moderately preterm (32 to 33 weeks), late preterm (34 to 36 weeks) and early term (37 to 38 weeks) may also be at increased risk of developmental problems, but this is not known for certain. A lack of understanding about the difficulties faced by children born between 32 to 38 weeks means that their health needs might not be met. If parents are worried about their child's development, national guidelines recommend they contact their GP or health visitor. However, due to many different factors which may be linked to their social or ethnic background, parents do not always get help from health professionals. Also, disadvantage (e.g. poverty) is associated with an increased risk of developmental problems. After seeing a child, GPs and health visitors must decide when to arrange tests or make a referral to a child development specialist. So far, there has been no research into GP and health visitors' understanding of the effects of birth before full term and the impact of disadvantage or ethnicity on the outcomes of children born before full term. What I want to do Determine what proportion of children born before full term have developmental problems Discover which groups of children born before full term are most likely to have developmental problems Talk to parents of children born before full term about their experience of healthcare, and how this is affected by disadvantage or ethnicity Find out about healthcare professionals' understanding of the developmental problems faced by children born before full termHow I will do it First, I will use data from the 'Born in Bradford' study, which tracks the health of around 13,500 children, now aged between 10 and 12. I will calculate how many children have developmental problems, and how many of these were born before full term. I will calculate which groups of children born before full term are most likely to have a developmental problem. Second, I will explore parents' experiences. Parents of children born before full term who are part of the Born in Bradford study will be asked whether they wish to participate in this additional research. Those who agree will be contacted for an interview. The interview will include their experience of accessing healthcare and any problems they had when trying to get help for their child. Finally, I will do an online survey of GPs, health visitors, and children's doctors, to see what they know about developmental problems related to birth before full term. The survey will be advertised on social media, professional newsletters, e-bulletins, and email distribution lists. Distribution and Impact of Results I plan to publish the results in scientific journals and work with charities to make results widely available e.g. on social media. The findings will help the development of services and guidelines. By finding out which children are most at risk of developmental problems, and which factors help families access the support their child needs, healthcare can be improved.

Research activity codes: 4.3 INFLUENCES AND IMPACT
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH