Characterising illness stages and recovery trajectories of eating disorders in young people via remote measurement technology (STORY): a multi-centre prospective cohort study protocol
Authors: Kuehne Carina , Phillips Matthew D. , Moody Sarah , Bryson Callum , Campbell Iain C. , Conde Pauline , Cummins Nicholas , Desrivières Sylvane , Dineley Judith , Dobson Richard , Douglas Daire , Folarin Amos , Gallop Lucy , Hemmings Amelia , İnce Başak , Mason Luke , Rashid Zulqarnain , Bromell Alice , Sims Christopher , Allen Karina , Bailie Chantal , Bains Parveen , Basher Mike , Battisti Francesca , Baudinet Julian , Bristow Katherine , Dawson Nicola , Dodd Lizzie , Frater Victoria , Freudenthal Robert , Gripton Beth , Kan Carol , Khor Joel W. T. , Kotze Nicus , Laverack Stuart , Martin Lee , Maxwell Sarah , McDonald Sarah , McKnight Delysia , McKay Ruairidh , Merrin Jessica , Nash Mel , Nicholls Dasha , Palmer Shirlie , Pearce Samantha , Roberts Catherine , Serpell Lucy , Severs Emilia , Simic Mima , Staton Amelia , Westaway Sian , Sharpe Helen , Schmidt Ulrike ,   EDIFY consortium, Bartel Heike , French Tara , Kelly Jonathan , Micali Nadia , Raman Sneha , Treasure Janet , Malik Umairah , Rabelo-da-Ponte Diego , Stephens Fiona , Opitz Tine , Trompeter Nora , Wilkins Jessica , Parnell Tamsin , Abbas Ruby , Bromell Alice , Davis Grace , Eadie Cameron , Gracie Lara , Heslop Beck , McKenzie Katie , Odubanjo Eniola , Sims Chris , Street Tallulah , Tavares-Semedo Andreia , Wilkinson Eleanor , Zocek Lucy 
Published: May 2024

Background

Eating disorders (EDs) are serious, often chronic, conditions associated with pronounced morbidity, mortality, and dysfunction increasingly affecting young people worldwide. Illness progression, stages and recovery trajectories of EDs are still poorly characterised. The STORY study dynamically and longitudinally assesses young people with different EDs (restricting; bingeing/bulimic presentations) and illness durations (earlier; later stages) compared to healthy controls. Remote measurement technology (RMT) with active and passive sensing is used to advance understanding of the heterogeneity of earlier and more progressed clinical presentations and predictors of recovery or relapse.

Methods

STORY follows 720 young people aged 16–25 with EDs and 120 healthy controls for 12 months. Online self-report questionnaires regularly assess ED symptoms, psychiatric comorbidities, quality of life, and socioeconomic environment. Additional ongoing monitoring using multi-parametric RMT via smartphones and wearable smart rings (‘Ōura ring’) unobtrusively measures individuals’ daily behaviour and physiology (e.g., Bluetooth connections, sleep, autonomic arousal). A subgroup of participants completes additional in-person cognitive and neuroimaging assessments at study-baseline and after 12 months.

Discussion

By leveraging these large-scale longitudinal data from participants across ED diagnoses and illness durations, the STORY study seeks to elucidate potential biopsychosocial predictors of outcome, their interplay with developmental and socioemotional changes, and barriers and facilitators of recovery. STORY holds the promise of providing actionable findings that can be translated into clinical practice by informing the development of both early intervention and personalised treatment that is tailored to illness stage and individual circumstances, ultimately disrupting the long-term burden of EDs on individuals and their families.