International consensus on patient-centred outcomes in eating disorders

Austin A 1 , De Silva U 2 , Ilesanmi C 2 , Likitabhorn T 2 , Miller I 2 , Sousa Fialho MDL 2 Show all authors , Austin SB 3 , Caldwell B 4 , Chew CSE 5 , Chua SN 6 , Dooley-Hash S 7 , Downs J 8 , El Khazen Hadati C 9 , Herpertz-Dahlmann B 10 , Lampert J 11 , Latzer Y 12 , Machado PPP 13 , Maguire S 14 , Malik M 15 , Moser CM 16 , Myers E 17 , Pastor IR 18 , Russell J 19 , Smolar L 20 , Steiger H 21 , Tan E 22 , Trujillo-Chi Vacuán E 23 , Tseng MM 24 , van Furth EF 25 , Wildes JE 26 , Peat C 27 , Richmond TK 28

Affiliations 

  • 1 Department of Community Health Sciences, and O'Brien Institute for Public Health, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada; Department of Psychological Medicine, King's College London, London, UK. Electronic address: [email protected]
  • 2 International Consortium for Health Outcomes Measurement, Boston, MA, USA
  • 3 Department of Social and Behavioral Sciences, Harvard T H Chan School of Public Health, Boston, MA, USA; Division of Adolescent and Young Adult Medicine, Boston Children's Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA
  • 4 Eating Disorders Victoria, Abbotsford, VIC, Australia
  • 5 Adolescent Medicine Service, Department of Paediatrics, Kandang Kerbau Women's and Children's Hospital, Singapore
  • 6 Relate Mental Health Malaysia, Kuala Lumpur, Malaysia
  • 7 Department of Emergency Medicine, University of Michigan Medical School, Ann Arbor, MI, USA
  • 8 Royal College of Psychiatry, London, UK
  • 9 American Center for Psychiatry and Neurology, Dubai, United Arab Emirates
  • 10 Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, RWTH Aachen, Aachen, Germany
  • 11 The Emily Program, St Paul, MN, USA; REDC Consortium, New York, NY, USA
  • 12 Faculty of Social Welfare and Health Sciences, University of Haifa, Haifa, Israel; Eating Disorders Institution, Psychiatric Division, Rambam Health Care Campus, Haifa, Israel
  • 13 Psychotherapy and Psychopathology Research Lab, Psychology Research Centre, School of Psychology, University of Minho, Braga, Portugal
  • 14 InsideOut Institute for Eating Disorders, The University of Sydney, Sydney, NSW, Australia; Sydney School of Medicine, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  • 15 Institute of Pharmaceutical Sciences, Hamdard University, Islamabad, Pakistan; Cyntax Health Projects, Islamabad, Pakistan
  • 16 Programa de Transtornos Alimentares em Adultos, Hospital de Clínicas de Porto Alegre, Porto Alegre, Brazil; Graduate Program in Psychiatry and Behavioral Sciences, UFRGS, Porto Alegre, Brazil
  • 17 Advice and Consensus, Springfield, VA, USA
  • 18 Academy of Eating Disorders, Reston, VA, USA
  • 19 Sydney School of Medicine, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia; NSW Statewide Eating Disorder Service, Peter Beumont Unit, Professor Marie Bashir Centre, Royal Prince Alfred Hospital, Camperdown, NSW, Australia
  • 20 National Eating Disorders Association, White Plains, NY, USA
  • 21 Eating Disorder Continuum, Douglas Mental Health University Institute, Montreal, QC, Canada; Psychiatry Department, McGill University, Montreal, QC, Canada
  • 22 InsideOut Institute for Eating Disorders, The University of Sydney, Sydney, NSW, Australia
  • 23 Comenzar de Nuevo Eating Disorders Research and Treatment Center, Tecnologico de Monterrey, Escuela de Medicina y Ciencias de la Salud, Monterrey, Mexico
  • 24 Department of Psychiatry, Shuang Ho Hospital, Taipei Medical University, New Taipei City, Taiwan; Department of Psychiatry, School of Medicine, College of Medicine, Taipei Medical University, Taipei, Taiwan
  • 25 Rivierduinen Eating Disorders Ursula, Leiden, Netherlands; Department of Psychiatry, Leiden University Medical Center, Leiden, Netherlands
  • 26 Department of Psychiatry and Behavioral Neuroscience, University of Chicago, Chicago, IL, USA
  • 27 Department of Psychiatry, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
  • 28 Division of Adolescent and Young Adult Medicine, Boston Children's Hospital, Boston, MA, USA; Department of Pediatrics, Harvard Medical School, Boston, MA, USA
Lancet Psychiatry, 2023 Dec;10(12):966-973.
PMID: 37769672 DOI: 10.1016/S2215-0366(23)00265-1

Abstract

The effectiveness of mental health care can be improved through coordinated and wide-scale outcome measurement. The International Consortium for Health Outcomes Measurement has produced collaborative sets of outcome measures for various mental health conditions, but no universal guideline exists for eating disorders. This Position Paper presents a set of outcomes and measures for eating disorders as determined by 24 international experts from professional and lived experience backgrounds. An adapted Delphi technique was used, and results were assessed through an open review survey. Final recommendations suggest outcomes should be tracked across four domains: eating disorder behaviours and cognitions, physical health, co-occurring mental health conditions, and quality of life and social functioning. Outcomes are collected using three to five patient-reported measures. For children aged between 6 years and 12 years, the measures include the Children's Eating Attitude Test (or, for those with avoidant restrictive food intake disorder, the Eating Disorder in Youth Questionnaire), the KIDSCREEN-10, and the Revised Children's Anxiety and Depression Screener-25. For adolescents aged between 13 years and 17 years, the measures include the Eating Disorder Examination Questionnaire (EDE-Q; or, for avoidant restrictive food intake disorder, the Nine-Item Avoidant Restrictive Food Intake Disorder Screener [NIAS]), the two-item Patient Health Questionnaire (PHQ-2), the nine-item Patient Health Questionnaire (PHQ-9), the two-item Generalised Anxiety Disorder (GAD-2), the seven-item Generalised Anxiety Disorder (GAD-7), and the KIDSCREEN-10. For adults older than 18 years, measures include the EDE-Q (or, for avoidant restrictive food intake disorder, the NIAS), the PHQ-2, the PHQ-9, the GAD-2, the GAD-7, the Clinical Impairment Assessment, and the 12-item WHO Disability Assessment Schedule 2.0. These questionnaires should be supplemented by information on patient characteristics and circumstances (ie, demographic, historical, and clinical factors). International adoption of these guidelines will allow comparison of research and clinical interventions to determine which settings and interventions work best, and for whom.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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