Characterising illness stages and recovery trajectories of eating disorders in young people via remote measurement technology (STORY): A multi-centre prospective cohort study protocol

Carina Kuehne, Matthew Phillips, Sarah Moody, Callum Bryson, Iain Campbell, Pauline Conde, Nicholas Cummins, Sylvane Desrivieres, Judith Dineley, Richard Dobson, Daire Douglas, Amos Folarin, Lucy Gallop, Amelia Hemmings, Başak İnce, Luke Mason, Zulqarnain Rashid, Alice Bromley, Christopher Sims, Karina AllenChantal Bailie, Parveen Bains, Mike Basher, Francesca Battisti, Julian Baudinet, Katherine Bristow, Nicola Dawson, Lizzie Dodd, Victoria Frater, Robert Freudenthal, Beth Gripton, Carol Kan, Joel Khor, Nicus Kotze, Stuart Laverack, Lee Martin, Sarah Maxwell, Sarah McDonald, Delysia McNight, Ruairidh McKay, Jessica Merrin, Mel Nash, Dasha Nicholls, Shirlie Palmer, Samantha Pearce, Catherine Roberts, Lucy Serpell, Emilia Severs, Mima Simic, Amelia Staton, Sian Westaway, Helen Sharpe, Ulrike Schmidt*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

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.
Original languageEnglish
Article number409
JournalBMC Psychiatry
Volume24
Issue number1
DOIs
Publication statusPublished - 30 May 2024

Keywords

  • eating disorders
  • recovery
  • progression
  • clinical staging
  • remote measurement technology
  • longitudinal monitoring
  • prospective study
  • observational cohorts

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