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Eating Disorders: Tell your STORY, Change the Narrative



 

As part of our Eating Disorders Awareness Week blog series, Sarah Moody shares the aims of an ambitious new longitudinal study part of the UKRI funded EDIFY project, which seeks to better understand the unique recovery process of young people with eating disorders.

 

Eating disorders are serious mental health disorders which can have a severe impact on an individual’s physical and mental health and well-being. Whilst eating disorders can begin at any time of life, most people with eating disorders first develop difficulties in adolescence and early adulthood. Eating disorders are starting to be understood as progressive disorders, meaning that treatment may become more difficult over time, and different approaches may be needed for earlier versus longer term illness. As such, there has been an increased focus on early intervention in eating disorders and understanding the processes which impact recovery in different groups.


As part of a UKRI-funded project, a new EDIFY study aims to shed further light on this (www.edifyresearch.co.uk). The STORY study (Characterising Illness Stages and Recovery Trajectories in Young People with Eating Disorders) is a longitudinal observational study which aims to gather data on young people aged 16 to 25 over the course of one year. The STORY study has an ambitious recruitment target of 840 people which will be split into three groups: young people who have had an eating disorder for less than three years, those who have had an eating disorder for more than three years, and those without an eating disorder (the control group). We are interested in recruiting young people with all types of eating disorders, including anorexia nervosa, binge eating disorder, ARFID, and other specified feeding and eating disorder (OSFED). As we know so little about the recovery journeys in people typically underrepresented in eating disorder research (e.g., boys and men, those in larger bodies, from ethnic minority backgrounds, lower socio-economic groups and more rural locations), we are working hard to recruit as diverse a sample as possible.


Participants involved in the STORY study will complete various online questionnaires at the beginning of the study, and a six and twelve months. Participants will also be invited to take part in a number of cognitive tasks and, if they live near to London, neuroimaging. The STORY study is additionally using active and passive remote measurement technology to understand more about recovery processes in daily life. This consists of a passive app that will record data normally collected by phones, such as Bluetooth connections and screen time, which can be used to explore factors such as how much social contact a young person has. An accompanying active app will ask participants to complete short questionnaires and tasks at various points during the 12-month study period, asking about mood and daily life events. Participants will be invited to wear a smart ring (Oura) for the whole study period, which will provide rich information on physical indicators of mood and stress, such as heart rate and sleep.


The overall aim is to use this new, deeply phenotyped cohort to help us better understand the unique recovery process of young people with eating disorders, and what hinders or helps young people during this time. Ultimately, we hope that this study will aid in tailoring treatment to where someone is in their recovery journey, supporting good outcomes for all.

The STORY study is now recruiting, so if you would like to get involved, or know someone who might be interested in taking part, more information can be found on our website including our recruitment video!


 


Sarah Moody is a research assistant working at the University of Edinburgh on the STORY study as part of the EDIFY project.  

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