Multicenter Study

. 2024 May 30;24(1):409.

doi: 10.1186/s12888-024-05841-w.

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^#¹, Matthew D Phillips^#¹, Sarah Moody², Callum Bryson¹, Iain C Campbell¹, Pauline Conde³, Nicholas Cummins³, Sylvane Desrivières⁴, Judith Dineley³, Richard Dobson^{3

5

6}, Daire Douglas¹, Amos Folarin^{3

5

6}, Lucy Gallop¹, Amelia Hemmings¹, Başak İnce¹, Luke Mason⁷, Zulqarnain Rashid³, Alice Bromell⁸, Christopher Sims⁸, Karina Allen^{1

9}, Chantal Bailie¹⁰, Parveen Bains¹¹, Mike Basher¹², Francesca Battisti¹¹, Julian Baudinet^{1

9}, Katherine Bristow¹², Nicola Dawson¹³, Lizzie Dodd¹⁴, Victoria Frater¹⁵, Robert Freudenthal¹⁶, Beth Gripton¹⁷, Carol Kan¹⁸, Joel W T Khor¹⁹, Nicus Kotze²⁰, Stuart Laverack²¹, Lee Martin¹⁷, Sarah Maxwell²², Sarah McDonald²³, Delysia McKnight²⁴, Ruairidh McKay²⁵, Jessica Merrin¹⁴, Mel Nash²⁶, Dasha Nicholls^{18

27}, Shirlie Palmer²⁸, Samantha Pearce¹⁰, Catherine Roberts²⁹, Lucy Serpell^{30

31}, Emilia Severs³⁰, Mima Simic⁹, Amelia Staton²³, Sian Westaway³², Helen Sharpe^#², Ulrike Schmidt^#^{33

34}; EDIFY consortium

Collaborators, Affiliations

Collaborators

Affiliations

¹ Centre for Research in Eating and Weight Disorders, Institute of Psychiatry, King's College London, Psychology & Neuroscience London (IoPPN), 103 Denmark Hill, First Floor, London, SE5 8AZ, UK.
² School of Health in Social Science, The University of Edinburgh, Edinburgh, UK.
³ Department of Biostatistics & Health Informatics, IoPPN, King's College London, London, UK.
⁴ Social, Genetic & Developmental Psychiatry Centre, IoPPN, King's College London, London, UK.
⁵ NIHR Maudsley Biomedical Research Centre, London, UK.
⁶ University College London, Institute of Health Informatics, London, UK.
⁷ Department of Forensic and Neurodevelopmental Science, IoPPN, King's College London, London, UK.
⁸ EDIFY, London, UK.
⁹ South London and Maudsley NHS Foundation Trust, London, UK.
¹⁰ Cornwall Partnership NHS Foundation Trus, Bodmin, Cornwall, UK.
¹¹ Oxford Health NHS Foundation Trust, Oxford, Oxfordshire, UK.
¹² Cambridgeshire and Peterborough NHS Foundation Trust, Fulbourn, Cambridgeshire, UK.
¹³ Bradford District Care NHS Foundation Trust, West Yorkshire, UK.
¹⁴ South West Yorkshire Partnership NHS Foundation Trust, Wakefield, UK.
¹⁵ Cumbria Northumberland Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, UK.
¹⁶ Barnet, Enfield and Haringey Mental Health NHS Foundation Trust, London, UK.
¹⁷ Leeds and York Partnership NHS Foundation Trust, Leeds, UK.
¹⁸ Central and North West London NHS Foundation Trust, London, UK.
¹⁹ South West London & St. George's Mental Health NHS Trust, St George's Eating Disorders Service, London, UK.
²⁰ Dorset Healthcare University NHS Foundation Trust, Poole, Dorset, UK.
²¹ Derbyshire Healthcare NHS Foundation Trust, Derby, Derbyshire, UK.
²² Norfolk and Suffolk NHS Foundation Trust, Norwich, Norfolk, UK.
²³ Nottinghamshire Healthcare NHS Foundation Trust, Nottingham, UK.
²⁴ North Staffordshire Combined Healthcare NHS Trust; Trentham, Staffordshire, UK.
²⁵ NHS Lothian - NHS Scotland, Edinburgh, UK.
²⁶ Devon Partnership NHS Foundation Trust, Exeter, Devon, UK.
²⁷ Division of Psychiatry, Department of Brain Sciences, Imperial College London, London, UK.
²⁸ Somerset Partnership NHS Foundation Trust, Taunton, UK.
²⁹ Solent NHS Foundation Trust, Southampton, UK.
³⁰ North East London NHS Foundation Trust, London, UK.
³¹ Division of Psychology and Language Sciences, University College London, London, UK.
³² Herefordshire and Worcestershire Health and Care NHS Trust, Worcester, UK.
³³ Centre for Research in Eating and Weight Disorders, Institute of Psychiatry, King's College London, Psychology & Neuroscience London (IoPPN), 103 Denmark Hill, First Floor, London, SE5 8AZ, UK. ulrike.schmidt@kcl.ac.uk.
³⁴ South London and Maudsley NHS Foundation Trust, London, UK. ulrike.schmidt@kcl.ac.uk.

^# Contributed equally.

PMID: 38816707
PMCID: PMC11137943
DOI: 10.1186/s12888-024-05841-w

Multicenter Study

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 et al. BMC Psychiatry. 2024.

. 2024 May 30;24(1):409.

doi: 10.1186/s12888-024-05841-w.

Authors

Collaborators

Affiliations

¹ Centre for Research in Eating and Weight Disorders, Institute of Psychiatry, King's College London, Psychology & Neuroscience London (IoPPN), 103 Denmark Hill, First Floor, London, SE5 8AZ, UK.
² School of Health in Social Science, The University of Edinburgh, Edinburgh, UK.
³ Department of Biostatistics & Health Informatics, IoPPN, King's College London, London, UK.
⁴ Social, Genetic & Developmental Psychiatry Centre, IoPPN, King's College London, London, UK.
⁵ NIHR Maudsley Biomedical Research Centre, London, UK.
⁶ University College London, Institute of Health Informatics, London, UK.
⁷ Department of Forensic and Neurodevelopmental Science, IoPPN, King's College London, London, UK.
⁸ EDIFY, London, UK.
⁹ South London and Maudsley NHS Foundation Trust, London, UK.
¹⁰ Cornwall Partnership NHS Foundation Trus, Bodmin, Cornwall, UK.
¹¹ Oxford Health NHS Foundation Trust, Oxford, Oxfordshire, UK.
¹² Cambridgeshire and Peterborough NHS Foundation Trust, Fulbourn, Cambridgeshire, UK.
¹³ Bradford District Care NHS Foundation Trust, West Yorkshire, UK.
¹⁴ South West Yorkshire Partnership NHS Foundation Trust, Wakefield, UK.
¹⁵ Cumbria Northumberland Tyne and Wear NHS Foundation Trust, Newcastle Upon Tyne, UK.
¹⁶ Barnet, Enfield and Haringey Mental Health NHS Foundation Trust, London, UK.
¹⁷ Leeds and York Partnership NHS Foundation Trust, Leeds, UK.
¹⁸ Central and North West London NHS Foundation Trust, London, UK.
¹⁹ South West London & St. George's Mental Health NHS Trust, St George's Eating Disorders Service, London, UK.
²⁰ Dorset Healthcare University NHS Foundation Trust, Poole, Dorset, UK.
²¹ Derbyshire Healthcare NHS Foundation Trust, Derby, Derbyshire, UK.
²² Norfolk and Suffolk NHS Foundation Trust, Norwich, Norfolk, UK.
²³ Nottinghamshire Healthcare NHS Foundation Trust, Nottingham, UK.
²⁴ North Staffordshire Combined Healthcare NHS Trust; Trentham, Staffordshire, UK.
²⁵ NHS Lothian - NHS Scotland, Edinburgh, UK.
²⁶ Devon Partnership NHS Foundation Trust, Exeter, Devon, UK.
²⁷ Division of Psychiatry, Department of Brain Sciences, Imperial College London, London, UK.
²⁸ Somerset Partnership NHS Foundation Trust, Taunton, UK.
²⁹ Solent NHS Foundation Trust, Southampton, UK.
³⁰ North East London NHS Foundation Trust, London, UK.
³¹ Division of Psychology and Language Sciences, University College London, London, UK.
³² Herefordshire and Worcestershire Health and Care NHS Trust, Worcester, UK.
³³ Centre for Research in Eating and Weight Disorders, Institute of Psychiatry, King's College London, Psychology & Neuroscience London (IoPPN), 103 Denmark Hill, First Floor, London, SE5 8AZ, UK. ulrike.schmidt@kcl.ac.uk.
³⁴ South London and Maudsley NHS Foundation Trust, London, UK. ulrike.schmidt@kcl.ac.uk.

^# Contributed equally.

PMID: 38816707
PMCID: PMC11137943
DOI: 10.1186/s12888-024-05841-w

Erratum in

Correction: Characterising illness stages and recovery trajectories of eating disorders in young people via remote measurement technology (STORY): a multi-centre prospective cohort study protocol.
Kuehne C, Phillips MD, Moody S, Bryson C, Campbell IC, Conde P, Cummins N, Desrivières S, Dineley J, Dobson R, Douglas D, Folarin A, Gallop L, Hemmings A, İnce B, Mason L, Rashid Z, Bromell A, Sims C, Allen K, Bailie C, Bains P, Basher M, Battisti F, Baudinet J, Bristow K, Dawson N, Dodd L, Frater V, Freudenthal R, Gripton B, Kan C, Khor JWT, Kotze N, Laverack S, Martin L, Maxwell S, McDonald S, McKnight D, McKay R, Merrin J, Nash M, Nicholls D, Palmer S, Pearce S, Roberts C, Serpell L, Severs E, Simic M, Staton A, Westaway S, Sharpe H, Schmidt U; EDIFY consortium. Kuehne C, et al. BMC Psychiatry. 2024 Sep 19;24(1):624. doi: 10.1186/s12888-024-06039-w. BMC Psychiatry. 2024. PMID: 39300409 Free PMC article. No abstract available.

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.

Keywords: Clinical staging; Eating disorders; Longitudinal monitoring; Observational cohort; Progression; Prospective study; Recovery; Remote measurement technology.

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Conflict of interest statement

The authors declare no competing interests.

Figures

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References

1. Schmidt U, Adan R, Böhm I, Campbell IC, Dingemans A, Ehrlich S, et al. Eating disorders: The big issue. The Lancet Psychiatry. 2016;3(4):313–5. - PubMed
1. Treasure J, Duarte TA, Schmidt U. Eating Disorders. The Lancet. 2020;396(10227):800–911. - PubMed
1. Qian J, Wu Y, Liu F, Zhu Y, Jin H, Zhang H, et al. An update on the prevalence of eating disorders in the general population: a systematic review and meta-analysis. Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity. 2022;27(2):415–28. - PMC - PubMed
1. van Hoeken D, Hoek HW. Review of the burden of eating disorders: mortality, disability, costs, quality of life, and family burden. Curr Opin Psychiatry. 2020;33(6):521–7. - PMC - PubMed
1. Solmi M, Radua J, Olivola M, Croce E, Soardo L, Salazar de Pablo G, et al. Age at onset of mental disorders worldwide: large-scale meta-analysis of 192 epidemiological studies. Mol Psychiatry. 2022;27(1):281–95. - PMC - PubMed

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

Collaborators

Affiliations

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

Collaborators

Affiliations

Erratum in

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical