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

Lead Research Organisation: University of Bristol
Department Name: Faculty of Health Sciences


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.

Technical Summary

Children born with a cleft of the lip and/or palate are vulnerable to mental health issues. Through this project, we aim to better understand which children need additional psychological support. We will use a unique large longitudinal cohort, the Cleft Collective. We will supplement this dataset by: 1) collecting additional questionnaire data to study mental health outcomes from childhood to adolescence; 2) linking to National Pupil Database data on educational factors likely to influence or be influenced by mental health. Using these data, we will quantify rates of mental health and neurodevelopmental problems in children born with a cleft by calculating and comparing trajectories of relevant traits between children in the Cleft Collective, children without a cleft but at a high genetic risk of poor mental health (from the ECHO study), and typically developing children from two general population cohorts. To explore genetic risks for mental health issues in individuals born with a cleft, we will use LD-score regression to estimate the genetic correlation and Mendelian randomization to explore causal effects between genetic liability to cleft and psychiatric disorders. We will use multivariable regression to test associations between multiple pre- and post-natal environmental risk factors and mental health outcomes in children in the Cleft Collective. We will also study the effect of timing of surgery and schooling on mental health, by using COVID-19 related disruptions to these factors as a natural experiment. Our epidemiological investigations will provide unique insights into which children born with a cleft are most at risk of mental health issues. Finally, we will hold workshops and focus groups with our existing networks of clinical and patient community collaborators to co-produce a set of guidelines for the NHS cleft teams and teachers to enable them to act on our findings and help improve mental health outcomes for this group of vulnerable children.


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Berman S (2024) Prevalence and Factors Associated with Behavioral Problems in 5-Year-Old Children Born with Cleft Lip and/or Palate from the Cleft Collective. in The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association

Description Career Development Fund - Informing our understanding of the aetiology of cleft lip and/or palate
Amount £21,175 (GBP)
Organisation University of Bristol 
Sector Academic/University
Country United Kingdom
Start 02/2023 
End 07/2023
Title Cleft Collective Cohort Studies 
Description Questionnaire responses from two parents/carers from each family in CC who will have a child turning 5 (1,825 parents), 8 (2,098 parents), 10 (1,352 parents) and 12-14 years (884 parents) as well as 275 children aged 12-14 years to self-complete (N=6,159 parent-completed and 275 self-completed questionnaires). 
Type Of Material Database/Collection of data 
Year Produced 2023 
Provided To Others? Yes  
Impact The questionnaire responses are currently being collected and cleaned. Data will be available to researchers across the world for research purposes related to cleft.