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

出生时有唇裂和/或腭裂的儿童一生都面临着严峻的挑战。他们接受多次手术，并接受多次临床预约，给儿童及其家人带来了巨大的压力。许多孩子会经历面部毁容和表达自己的困难，这可能会导致取笑和自卑。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。随着新冠肺炎疫情给延迟手术和扰乱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，这项研究项目旨在阐明精神分裂症与心理健康问题之间的联系。我们将利用我们现有的大规模全人群和临床队列研究，包括裂隙集体队列研究，这是世界上对受裂隙影响的儿童和家庭进行的最大和最详细的纵向队列研究。在这个既定的队列中，随着儿童成长和进入青春期，我们将发送额外的问卷，以收集更多信息，而青春期往往会出现心理健康问题。使用这些数据，我们将首次详细描述出生时患有唇裂的儿童的心理健康结果，并将其与未患唇裂的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塑造先天畸形儿童心理健康的贡献。通过链接到国家学生数据库，我们将探索可能影响心理健康或受到心理健康影响的教育因素，包括上学和特殊教育需求。出生时患有先天性唇裂的儿童可能特别容易受到新冠肺炎疫情的影响，因为他们中的许多人在手术和获得护理方面遇到了延误，而且在在家接受教育的同时，他们可能在网上交流方面尤其困难。我们将使用裂隙集体队列研究的新冠肺炎调查问卷中的数据来研究大流行对这些特别脆弱儿童的心理健康的影响。最后，我们将利用我们现有的与NHS裂隙团队和裂隙慈善机构的强大联系，将我们的发现直接馈送到临床和教育决策和政策中，使临床医生和教师能够计划提供服务，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.