Eating Disorders: Delineating illness and recovery trajectories to inform personalised prevention and early intervention in young people (EDIFY)

这项工作的新之处：从精神病到癌症，许多医学领域都表明了让人们迅速接受治疗（早期干预）和根据一个人的疾病阶段进行治疗的重要性。这种方法导致了更好的治疗和提高生存率。目前，这种方法不存在饮食失调症（ED）。在这个项目中，我们将与年轻人（YP）合作，开发一个跨学科的，以证据为基础的模型，人们如何发展ED。这将使我们更好地了解疾病的各个阶段（风险期、早期阶段、晚期阶段），并提高我们对人们为什么、如何以及何时在不同阶段之间过渡的理解。它将探索症状如何发展和维持的不同模式，以及YP如何恢复。这种模式将通过为临床医生提供一个“地图”来改变ED的治疗方式，以根据YP的个人情况进行治疗。为什么这很重要：ED是致残的，致命的疾病，影响六分之一的年轻女性和二十分之一的男性。大多数人在15至24岁之间发展ED，这意味着ED会严重影响YP的生活机会（例如，破坏教育）。神经性厌食症在YP的任何精神疾病中死亡率最高，目前的治疗方法只有中等效果。ED的早期干预是英国当前的政策重点，这使得我们的研究计划的理想时机。目的：在这个项目中，我们将：1.与YP合作，共同制作一个跨学科的模型，说明人们如何发展ED，如何度过疾病阶段并恢复。2.使用我们的模型来开发和测试新的干预措施，并为YP与不同的艾德风险概况/疾病阶段。3.开发创造性的方法，以增加公众和专业人士对ED和YP的这些疾病的生活经历的理解。研究计划：我们的提案有六个集成的工作流（WS）。WS1（生活经验）将使用定性和艺术为基础的方法来记录YP的艾德疾病和恢复的生活经验。我们将专注于捕捉多元化和代表性不足的群体（例如BAME，LGBTQ+）的观点。WS2（风险与复原力）将使用六项现有的大型队列研究来评估生物，心理和社会因素如何相互作用，以增加YP发展艾德和/或高风险行为（例如，严格节食）。WS3（恢复）将评估首次发作ED的YP临床队列的恢复轨迹，从活动监测器和智能手机收集超过一年的真实的时间数据。这将包括直接从设备捕获数据（例如活动，心率），以及问卷调查，以了解症状如何响应日常压力源。WS4（疾病阶段和进展）将通过评估生物，心理和社会因素，包括对疾病相关刺激（例如食物）的注意力的认知评估，从早期到后期ED的变化来探索疾病阶段。WS5（预防和早期干预）将开发至少两种针对不同疾病阶段和个体特征的新干预措施，并测试大脑指导的干预措施如何预防晚期ED患者的长期困难。WS6（知识动员）将以创造性和可访问的方式与公众分享整个项目的结果（例如，包括三个受委托的戏剧/艺术项目。我们将做出的改变：我们的研究结果将改变艾德的检测、治疗和服务，并将支持包容性的、以证据为基础的艾德政策和实践的发展。这将支持患有ED的年轻人更早地寻求帮助，并帮助我们更快地发现ED，从而更早地恢复和更好的结果。提高对疾病阶段以及风险和疾病进展的个体差异的认识，将使护理方法更加个性化，并帮助我们为后代开发新的，更有效的治疗方法。

What's new about this work: Many areas of medicine, from psychosis to cancer, have shown the importance of getting people into treatment quickly (early intervention) and tailoring treatment to a person's stage of illness. This approach has led to better treatment and improved survival rates. At the moment, this approach does not exist for eating disorders (EDs). In this project, we will work with young people (YP) to develop an interdisciplinary, evidence-based model of how people develop EDs. This will characterise illness stages (at-risk, early stage, late stage) and improve our understanding of why, how and when people transition between stages. It will explore different patterns of how symptoms develop and are maintained, and how YP recover. This model will transform the way EDs are treated by providing a 'map' for clinicians to tailor treatments to a YP's individual circumstances. Why this is important: EDs are disabling, deadly disorders affecting one in six young females and one in 20 males. Most people develop EDs between the ages of 15 and 24 years, meaning EDs can seriously impact YP's life chances (e.g., disrupting education). Anorexia nervosa has the highest death rate of any mental disorder in YP and current treatments are only moderately effective. Early intervention for EDs is a current policy priority in the UK, making this the ideal time for our research programme. Aims: In this project we will: 1. Work with YP to co-produce an inter-disciplinary model of how people develop EDs, how they move through illness stages and recover. 2. Use our model to develop and test new interventions with and for YP with different ED risk profiles/illness stages. 3. Develop creative ways to increase public and professional understanding of EDs and YP's lived experiences of these illnesses. Research plan: Our proposal has six integrated work streams (WSs). WS1 (Lived Experience) will use qualitative and arts-based methods to document YP's lived experiences of ED illness and recovery. We will focus on capturing the perspectives of diverse and under-represented groups (e.g. BAME, LGBTQ+). WS2 (Risk & Resilience) will use six large existing cohort studies to assess how biological, psychological and social factors interact to increase a YP's vulnerability to developing an ED and/or high risk behaviours (e.g., strict dieting). WS3 (Recovery) will assess the recovery trajectories of a clinical cohort of YP with 1st episode EDs, gathering real time data over one year from activity monitors and smartphones. This will include capturing data directly from the device (e.g. activity, heart rate), alongside questionnaires to understand how symptoms change in response to daily stressors. WS4 (Illness Stages & Progression) will explore illness stages by assessing how biological, psychological and social factors, including cognitive assessments of attention to illness-relevant stimuli (e.g. food), change from early to later stage EDs. WS5 (Prevention & Early Intervention) will develop at least two new interventions that are tailored to different illness stages and individual characteristics, and test how brain-directed interventions might prevent long term difficulties in those with later-stage EDs. WS6 (Knowledge Mobilisation) will share findings from the whole project with the public in creative and accessible ways (e.g., infographics) including three commissioned theatre/arts projects. The change we will make: Our findings will transform ED detection, treatment and services and will support the development of inclusive, evidence-based ED policy and practice. This will support young people with EDs to seek help earlier, and help us to spot EDs more quickly, leading to earlier recovery and better outcomes. Improved knowledge of illness stages and of individual differences in risk and illness progression will allow a more personalised approach to care and help us to develop new, more effective treatments for future generations.