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

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.

Background: Early intervention and models of illness stages have been the focus of intense research activity across multiple disorders. Nothing comparable exists in eating disorders (EDs). Together with young people (YP), we will co-create an interdisciplinary, evidence-based model of how people develop EDs, what characterises illness stages and drives transitions between them, trajectories of symptoms across development, and how YP recover. This will provide a map for generating personalised, developmentally-informed interventions, tailored to risk profiles and illness stages, thus transforming ED policy and practice. Research Plan: Our proposal consists of 6 integrated work streams (WSs). WSs 1 and 6 are crosscutting. WS1 will use qualitative and arts-based approaches to co-create narrative accounts with YP of their lived experiences of ED illness and recovery, with emphasis on capturing the perspectives of diverse, under-represented groups (e.g. BAME, LGBTQ+). WS2 will use a combination of six well-characterised cohorts to develop and test predictive models of risk and resilience for EDs and associated high-risk behaviours in YP. WS3 will assess the recovery trajectories of a clinical cohort of YP with 1st episode EDs, using remote measurement technology to gather real time data from activity monitors/smartphones. WS4 will use multi-modal assessments to compare the biopsychosocial profiles of YP with early- and later-illness stage and changes in these over time. WS5 will develop two intervention protocols appropriate for different illness/developmental stages based on our findings and test proof-of-concept for a brain-directed intervention for young people with later-stage EDs. Finally, WS6 will assess how to share and implement findings with the public in novel and accessible ways. Impact: Collectively, our findings will transform ED detection, treatment and services and will support development of inclusive, all-age evidence-based ED policy and practice.