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

Lead Research Organisation: King's College London
Department Name: Psychological Medicine

Abstract

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.

Technical Summary

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.

Publications

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Baudinet J (2023) Moderators of treatment effect in a randomised controlled trial of single- and multi-family therapy for anorexia nervosa in adolescents and emerging adults. in European eating disorders review : the journal of the Eating Disorders Association

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Chavanne AV (2023) Anxiety onset in adolescents: a machine-learning prediction. in Molecular psychiatry

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Davey E (2023) Improving programme-led and focused interventions for eating disorders: An experts' consensus statement-A UK perspective. in European eating disorders review : the journal of the Eating Disorders Association

 
Description Age-related eating disorders service transitions - a series of training modules (NHS-E funded) with contributions from Ulrike Schmidt and Karina Allen
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This training tool is available to all eating disorders clinicians in England and the wider UK
URL https://freedfromed.co.uk/eating-disorders-service-transitions
 
Description HEE National Whole Team Training for adult eating disorder teams (EDSA)
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact The aim of the 8 day training is to create reflective flourishing eating disorder teams that work collaboratively with patients and carers and are inclusive. The feedback suggests that participants feel that they have benefitted enormously from the training and that this has helped them to work on resetting their service post-covid, i.e. deal with waiting lists, ensure their service reaches out and facilitates access for diverse populations, and that service developments are co-produced with patients and carers.
 
Description MINDED Hub - eating disorders section (Karina Allen and Ulrike Schmidt)
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact The hub provides key information for clinicians, patients and families on different aspects of management and treatment of eating disorders
URL https://www.minded.org.uk/
 
Description Biomedical Research Centre at SLaM and KCL, Eating Disorders and Obesity theme (Schmidt Theme lead)
Amount £1,139,780 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 03/2023 
End 02/2028
 
Description Eating Disorders Clinical Research Network (PIs Gerome Breen and Karina Allen)
Amount £1,139,780 (GBP)
Organisation United Kingdom Research and Innovation 
Sector Public
Country United Kingdom
Start  
 
Description Enhancing eating disorder research networks: the Eating Disorders and Autism Collaborative (EDAC) (PIs Dr Karri Gillespie-Smith and Dr Fiona Duffy, University of Edinburgh; Dr Helen Sharpe is a Co-I)
Amount £804,648 (GBP)
Organisation United Kingdom Research and Innovation 
Sector Public
Country United Kingdom
Start  
 
Description Impact of calorie labelling on ED-patients (PI Tom Jewell, co-Is: Trompeter, Sharpe, Schmidt
Amount £461,025 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start  
 
Description Dr Anna Lavis. An anthropological approach to eating disorders: developing a socio-cultural strategy for research, treatment and prevention 
Organisation University of Birmingham
Department School of Psychology Birmingham
Country United Kingdom 
Sector Academic/University 
PI Contribution Professor Janet Treasure, an EDIFY consortium investigator is a collaborator on the above UKRI funded network grant
Collaborator Contribution Professor Treasure is contributing with her expertise and time
Impact Too early
Start Year 2023
 
Description Dr Francesca Solmi. The environment and eating disorders: developing novel measures and hypotheses through interdisciplinary collaborations 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Dr Helen Sharpe, Co-PI of the EDIFY consortium is a collaborator on Dr Solmi's network grant and as such offers her time and expertise in working with cohorts.
Collaborator Contribution TBC
Impact Too early
Start Year 2023
 
Description EDIFY 
Organisation King's College London
Department Department of Psychological Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution Research Project titled: Eating Disorders: Delineating illness and recovery trajectories to inform personalised prevention and early intervention -EDIFY The overarching aim of this project is to transform the way in which eating disorders (ED) are identified, prevented, and treated. We hope to support young people to come forward for help and to give them the tools they need to recover more quickly. We will spearhead the development of inclusive, evidence-based ED policy and practice. With expertise in recruitment, acquisition and analysis of data from longitudinal cohorts acquired through the management of the ESTRA, STRATIFY and IMAGEN studies, I will lead analyses specifically aimed at developing and testing predictive models of risk and resilience for eating disorders and associated high-risk behaviours in young people.
Collaborator Contribution Eating disorders have complex aetiology, spanning neurobiological, genetic, psychological, social and cultural factors. Thus, transdisciplinary research is essential. Our group bridges disciplinary silos i.e. child and adult psychiatry/psychology; translational research; bioinformatics; intervention development; early intervention; schools-based interventions; neurobiology; genetics, longitudinal cohorts; epidemiology; psychosocial ED risk; arts- and design-led research; policy; and advocacy. Several of us have successfully collaborated on large scale research. We are a diverse group of academics in terms of gender, ethnicity, nationality and career stage, and have strong partnerships with YP advisory groups, YP with lived experience of an ED and with carers/families.
Impact - Funding from the Medical Research Council: Funded Value £3,913,565 - multi-disciplinary collaboration including child and adult psychiatry/psychology; translational research; bioinformatics; intervention development; early intervention; schools-based interventions; neurobiology; genetics, longitudinal cohorts; epidemiology; psychosocial ED risk; arts- and design-led research; policy; and advocacy.
Start Year 2021
 
Title FREED-M help-seeking intervention 
Description We have made a smartphone friendly web-intervention to encourage help-seeking amongst young people with eating disorders. The intervention consists of 4 modules with questionnaires and personalised feedback based on these, animated short films and associated down-loadable resources on relevant topics (help-seeking, impact of eating disorders on physical and mental health, role of social media use in keeping eating disorders going, and self-reflection prompts. 
Type Of Technology Webtool/Application 
Year Produced 2022 
Impact We are currently evaluating this in a feasibility trial and hope to do further trials on it thereafter. Ultimately we would like to make this widely and openly available to users in the NHS. 
 
Title FREED-M help-seeking intervention 
Description We have made a smartphone friendly web-intervention to encourage help-seeking amongst young people with eating disorders. The intervention consists of 4 modules with questionnaires and personalised feedback based on these, animated short films and associated down-loadable resources on relevant topics (help-seeking, impact of eating disorders on physical and mental health, role of social media use in keeping eating disorders going, and self-reflection prompts. 
Type Of Technology Webtool/Application 
Year Produced 2022 
Impact We are currently evaluating this in a feasibility trial and hope to do further trials on it thereafter. Ultimately we would like to make this widely and openly available to users in the NHS. 
 
Title RADAR-base Data Collection Instruments 
Description Components of RADAR-base for data collection in a Remote Monitoring Study using the RADAR-base platform. 
Type Of Technology Webtool/Application 
Year Produced 2023 
Open Source License? Yes  
Impact Software and data collection instruments and wearable devices are required to perform the remote monitoring part of the research study. 
URL https://radar-base.org/
 
Description Eating Disorders Research Showcase 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The event combined the launch of the Centre for Research in Eating and Weight Disorders at King's College London and a research showcase, highlighting the EDIFY consortium work through talks, stalls and interactive engagement.
Year(s) Of Engagement Activity 2023
URL https://www.kcl.ac.uk/research/centre-for-research-in-eating-and-weight-disorders-crew
 
Description National early intervention conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The national early intervention in eating disorders conference was organised at the end of the national roll-out of FREED early intervention services via the AHSNs/HINs in 2023. EDIFY researchers contributed and highlighted EDIFY as a way of improving early intervention.
Year(s) Of Engagement Activity 2023
URL https://freedfromed.co.uk/news-and-stories/category/news
 
Description Youth advisors-Study participants 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Engaging study participants with newsletters communicating research findings in relation to eating disorders; blogs around eating disorders. This involved undergraduate students and youth advisors with a history of eating disorders. The later gave us feedback on our newsletters and commented on our research methodology and findings.
Year(s) Of Engagement Activity 2021,2022