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

这项工作的新特点：从精神病到癌症，医学的许多领域都表明了让人们迅速接受治疗(早期干预)和根据患者的疾病阶段量身定做治疗的重要性。这种方法带来了更好的治疗和更高的存活率。目前，这种方法还不适用于饮食失调(EDS)。在这个项目中，我们将与年轻人(YP)合作，开发一个跨学科的、以证据为基础的人们如何发展ED的模型。这将描述疾病阶段(高危、早期、晚期)的特征，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。这一模式将通过为临床医生提供一张根据青春期患者的个人情况量身定做治疗方案的“地图”，来改变治疗ED的方式。为什么这很重要：ED是致残的，每六名年轻女性中就有一人患有致命的疾病，每20名男性中就有一人受到影响。大多数人在15岁到24岁之间患上抑郁症，这意味着抑郁症会严重影响YP的生活机会(例如，扰乱教育)。在YP中，神经性厌食症的死亡率是所有精神障碍中最高的，目前的治疗方法只能起到适度的效果。对EDS的早期干预是英国当前的一项政策重点，这使得现在是我们研究计划的理想时机。目标：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，研究人们如何发展EDS，他们如何度过疾病阶段和康复。2.使用我们的模型开发和测试具有不同ED风险特征/疾病阶段的YP和YP的新干预措施。3.开发创造性的方法，增加公众和专业人士对急诊科医生和青年团对这些疾病的亲身经历的了解。研究计划：我们的提案有六个综合工作流(WSS)。WS1(生活体验)将使用定性和基于艺术的方法来记录YP的ED疾病和康复的生活经历。我们将专注于捕捉不同和代表性不足群体(例如BAME、LGBTQ+)的观点。WS2(风险与复原力)将使用现有的六项大型队列研究来评估生物、心理和社会因素如何相互作用，增加青春期患者患ED和/或高风险行为(例如，严格节食)的脆弱性。WS3(恢复)将使用第一集ED评估YP临床队列的恢复轨迹，从活动监测器和智能手机收集一年的实时数据。这将包括直接从设备捕获数据(例如活动、心率)，以及了解症状如何随着日常压力的变化而变化的问卷。WS4(疾病阶段和进展)将通过评估生物、心理和社会因素，包括对与疾病相关的刺激(例如食物)的认知评估，从早期到后期的ED如何变化来探索疾病的阶段。WS5(预防和早期干预)将开发至少两种根据不同疾病阶段和个人特征量身定做的新干预措施，并测试大脑指导的干预措施如何防止患有晚期EDS的人出现长期困难。WS6(知识动员)将以创造性和易懂的方式(如信息图)与公众分享整个项目的成果，包括三个委托的剧院/艺术项目。我们将做出的改变：我们的发现将改变勃起功能障碍的检测、治疗和服务，并将支持包容性、循证的勃起功能障碍政策和实践的发展。这将帮助患有急症的年轻人更早地寻求帮助，并帮助我们更快地发现急症，导致更早的康复和更好的结果。提高对疾病阶段以及风险和疾病进展的个体差异的了解将允许采取更个性化的护理方法，并帮助我们为子孙后代开发更有效的新疗法。

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.