Characterising Illness Stages, Progression and Recovery Trajectories of Eating Disorders in Young People (STORY)
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Key Documents
Overview
STORY is a research study focused on how we understand eating disorders in young people. It will explore the diverse experiences of people with eating disorders, mapping the different diverse routes into and out of the illness, as well as its distinct stages – we want to hear your story! Using this knowledge, we aim to develop a new model of eating disorder illness stages and recovery journeys to challenge stereotypes. This information will also help to provide a ‘map’ for clinicians to predict possible outcomes and develop treatment plans that are suited to the individual patient.
Summary
What is the study about?
Eating disorders are serious mental illnesses that involve intense concern about eating, weight or shape and disordered eating behaviours. Eating disorders can occur in individuals across gender identities, ethnicities, sexualities, and life circumstances and can have devastating impacts on these people’s lives.
There is more and more evidence suggesting that eating disorders are progressive disorders. For some people, symptoms may become more severe over time. For others, the symptoms may stay the same over time, or they may decrease. If someone has been unwell for some years, there may be long-lasting consequences. The sooner someone with an eating disorder gets help, the easier it is to recover quickly and fully. This is why it is important to understand the factors that drive change between different illness stages in eating disorders.
In addition, recovery from an eating disorder can be a long journey with twists and turns in the road. Recovery is also multifaceted and involves both the body and the mind. However, at the moment we don’t know what helps and hinders recovery – what can make the recovery journey quicker or slower, and what causes relapses? Discovering the details of the recovery process, including different stages and trajectories, and what may help or hinder recovery, is an important first step in developing effective interventions tailored to someone’s recovery journey.
What are you trying to find out?
We invite you to take part in our new study called ‘STORY’, a research study focused on how we understand eating disorders in young people. It will explore the diverse experiences of people with eating disorders, mapping the different diverse routes into and out of the illness, as well as its distinct stages – we want to hear your story! Using this knowledge, we aim to develop a new model of eating disorder illness stages and recovery journeys to challenge stereotypes. This information will also help to provide a ‘map’ for clinicians to predict possible outcomes and develop treatment plans that are suited to the individual patient.
You will be asked to download a smartphone app that will occasionally send you notifications to answer some questions on the app about your behaviours and mood or to complete a short speech task. You will receive these notifications at different times.
In addition, you can download a second passive app that will collect information about your environment and phone usage, using sensors built into any modern smartphone. This app will continuously send this information to us, using a Wi-Fi connection. This includes information about the noise and light in your surroundings, your Bluetooth interactions, your relative location, the apps you use, keystrokes, and your phone’s battery life. These passive measures have been used in many other studies, for example with individuals with depression and ADHD.
If you agree to take part, we will also give you a remote measurement ring (“Ōura Ring”) to wear on a finger of your choice for the duration of the study (12 months).
The Ōura ring consists of a stainless-steel titanium band with sensors located on the inside and has roughly the size and dimensions of a conventional ring. Using this ring, we will be able to measure physical indicators of your well-being, mood, and stress. The data will help us find out if these factors help recovery or cause relapse, for example, if sleep rhythm is related to eating disorder symptoms.
What does taking part involve?
You will be involved in our study for 12 months. This is an overview of STORY and all its study parts – or its chapters!
- Online study screening and providing consent (15mins)
- Online baseline assessment session (1hour — 1hour 30mins)
- In-person testing (1hour, optional)
- Neuroimaging session (1-2hours, optional)
- Remote measurement period: A smartphone and a wearable smart ring (12months)
- Follow-up online assessment and interview in month 6 (1hour — 1hour 15 mins)
- Final assessments and end-of study
If you have any questions or concerns which you would like to discuss with the research team before signing the consent form, you can always contact us – we are happy to help!
You will receive £20 for completing the first online baseline session, and another £15 for completion of each of the follow-up online assessments. This means, if you complete all three online assessments, you will receive a total of £50 by the end of the study.
If you take part in the in-person testing at the institute, you will receive an additional £25 per visit (two visits, total = £50). Similarly, if you take part in the neuroimaging session at the institute, you will receive an additional £25 per visit (two visits, total = £50) as well as an image of your brain! We will cover reasonable travel expenses to and from the institute.
For the remote measurement component of the study, you will receive £25 at the end of the study period. In addition, you can keep the smartphone after the study ends. However, if you decide not to complete the study and drop out before month 12, we ask you to return all study devices, so that we can give them to another study participant.
Who is it for?
We are looking for participants who are aged between 16 and 25 and either:
- have been diagnosed with an eating disorder or think they may have an eating disorder
- OR have no history of an eating disorder or any other current or past mental health diagnosis, to take part as a healthy control
Why is it important?
The STORY study aims to explore the diverse experiences of young people with eating disorders and how they recover from them. How do symptoms progress over time and what characterises earlier and later stages of eating disorders? What factors help or hinder recovery? All this information will allow us to deliver more personalised and effective interventions for young people with eating disorders in the future.
How can I find out more?
You can find out more information about taking part in this study by downloading the key documents at the top of this page, or visiting the study's project website here.
If you are interested in taking part in this study, or have questions for the research team, click the button below to email the research team:
Collaborators
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