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

出生时唇腭裂的孩子在他们的一生中都面临着严峻的挑战。他们接受多次手术，参加无数的临床预约，给儿童及其家庭带来了巨大的压力。许多孩子都会经历面部毁容，难以表达自己的意思，这可能会导致嘲笑和自卑。这些儿童特别容易受到心理健康问题的影响，但目前尚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大流行给推迟手术和扰乱学业带来更多困难，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，这个研究项目旨在揭示裂缝与心理健康问题之间的联系。我们将利用现有的大规模人群和临床队列研究，包括唇裂集体队列研究，这是世界上最大和最详细的唇裂儿童和家庭纵向队列研究。在这个已建立的队列中，随着孩子的成长和进入青春期，我们将发送额外的问卷来收集更多的信息，这是心理健康问题容易出现的时候。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状况，并将其与非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唇裂儿童心理健康的影响。通过与国家学生数据库连接，我们将探索可能影响或受心理健康影响的教育因素，包括出勤率和特殊教育需求。出生时患有唇腭裂的儿童可能特别容易受到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经历了延误，而且他们在家庭教育期间可能特别难以在线沟通。我们将使用Cleft集体队列研究的COVID-19问卷数据来研究大流行对这些特别脆弱的儿童心理健康的影响。最后，我们将利用我们现有的与NHS裂缝团队和裂缝慈善机构的紧密联系，将我们的发现直接提供给临床和教育决策和政策，使临床医生和教师能够计划提供，以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.