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

出生时唇腭裂的儿童在他们的一生中面临着坚韧的挑战。他们接受多次手术，并参加许多临床预约，给儿童及其家庭造成重大压力。许多儿童经历面部毁容和难以让自己被理解，这可能导致嘲笑和低自尊。这些儿童特别容易受到心理健康问题的影响，但目前还不清楚有多少儿童处于危险之中，以及如何识别他们。随着COVID-19大流行给手术延迟和学校教育带来更多困难，我们迫切需要更好地了解哪些儿童可能需要额外的心理支持。因此，本研究项目旨在阐明将裂缝与心理健康问题联系起来的途径。我们将利用现有的大规模人群和临床队列研究，包括Cleft Collective队列研究，这是世界上最大和最详细的受腭裂影响的儿童和家庭的纵向队列研究。在这个既定的队列中，我们将发送额外的问卷，以收集更多的信息，因为孩子们长大后进入青春期，这是心理健康问题往往出现的时候。利用这些数据，我们将首次详细描述先天性唇裂儿童的心理健康结果，并将其与无唇裂儿童的相同结果进行比较。我们将使用最先进的统计方法来研究遗传和环境因素对先天性唇裂儿童心理健康的影响。通过链接到全国学生数据库，我们将探讨教育因素可能会影响或受心理健康，包括入学率和特殊教育需求的影响。先天性唇腭裂儿童可能特别受COVID-19大流行的影响，因为他们中的许多人在手术和获得护理方面遇到了延误，而且他们在家中接受教育时可能在网上沟通方面遇到特别困难。我们将使用来自Cleft Collective队列研究的COVID-19问卷调查的数据，研究大流行对这些特别脆弱儿童的心理健康的影响。最后，我们将利用我们与NHS裂缝团队和裂缝慈善机构的现有紧密联系，将我们的研究结果直接纳入临床和教育决策和政策，使临床医生和教师能够计划提供改善这些儿童的心理健康结果。

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.