Improving mental health outcomes in children born with an orofacial cleft: Identifying children at most risk to target clinical provision

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Children born with a cleft (gap) in the lip and/or palate face tough challenges throughout their lives. They undergo multiple operations and attend numerous clinical appointments, creating significant stress on children and their families. Many children experience facial disfigurement and difficulties making themselves understood, which can lead to teasing and low self-esteem. These children are particularly vulnerable to mental health issues, but it's currently unclear how many children are at risk and how to identify them. With the COVID-19 pandemic introducing additional difficulties with delaying surgeries and disrupting schooling, we urgently need to develop a better understanding of which children are likely to need additional psychological support. Therefore, this research project aims to shed light on the pathways linking clefts to mental health problems. We will capitalise on our existing access to large-scale population-wide and clinical cohort studies, including the Cleft Collective cohort study, which is the world's largest and most detailed longitudinal cohort study of children and families affected by cleft. In this established cohort, we will send additional questionnaires to collect more information as the children grow up and enter puberty, which is when mental health problems tend to emerge. Using these data, we will provide the first detailed description of mental health outcomes in children born with a cleft, and compare this to the same outcomes in children without a cleft. We will use state-of-the-art statistical approaches to study the contribution of genetic and environmental factors to shaping mental health in children born with a cleft. By linking to the National Pupil Database, we will explore educational factors likely to influence or be influenced by mental health, including school attendance and special educational needs. Children born with a cleft are likely to be particularly affected by the COVID-19 pandemic, as many of them experienced delays in surgeries and accessing care, and they may have particular difficulties communicating online while being home-schooled. We will use data from the Cleft Collective cohort study's COVID-19 questionnaire to study the impact of the pandemic on the mental health of these particularly vulnerable children. Finally, we will use our existing strong links to the NHS cleft teams and cleft charities to feed our findings directly into clinical and educational decision making and policy to enable clinicians and teachers to plan provision to improve mental health outcomes for these children.