Weight loss behaviours missing in tools to diagnose eating disorders

Researchers at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London have identified a range of weight loss behaviours which are not included in current assessment criteria for eating disorders. These gaps may lead to missed or incorrect eating disorder diagnoses and treatment plans.

The study, published in the International Journal of Eating Disorders, is the first large-scale investigation of under-recognised weight loss behaviours in individuals with eating disorders. It identifies a range of behaviours not captured by existing eating disorder assessment tools.

The findings highlight a range of strategies used to control weight, from more common dietary methods to less common, more extreme practices not typically captured by standard assessments.

Researchers analysed data from 1,675 participants with anorexia nervosa, bulimia nervosa, or binge-eating disorder in the Eating Disorders Genetics Initiative (EDGI UK) and Genetic Links to Anxiety and Depression (GLAD) studies. These are the UK’s largest research projects on eating disorders and anxiety and depression respectively.

The researchers identified weight loss behaviours through text mining over 3,000 words and phrases derived from free-text responses to a questionnaire item.

Researchers suggest this gap in diagnostic criteria may lead to missed or incorrect diagnoses, as patients may not disclose certain behaviours unless specifically prompted. They may not disclose behaviours in clinical interviews due to shame or stigma.

They emphasise the need for better questionnaire-based eating disorder assessments to inform detection of eating disorders, accurate diagnoses and appropriate personalised treatment plans.

EDGI UK and GLAD are led by researchers at the IoPPN and NIHR Maudsley BRC as part of the NIHR BioResource.

Saakshi Kakar, PhD student at the IoPPN and first author of the study, said:

“As with all areas of human behaviour, weight loss behaviours utilised by those living with eating disorders evolve over time. Individuals may adopt new practices, sometimes driven by trends, accessibility or misconceptions about health.

“Our findings show that we must move from focusing on commonly known behaviours to a more inclusive assessment process that expects and accommodates a wider range of behaviours. Working with people with lived experience will help ensure that these evolving behaviours are recognised and incorporated effectively into clinical practice and research.”

Dr Karina Allen, Consultant Clinical Psychologist at South London and Maudsley NHS Foundation Trust and Adjunct Reader at the IoPPN, said:

“Clinicians know that not everyone with an eating disorder is the same – eating disorder behaviours can look very different across different individuals. This study highlights the wide range of behaviours that people may use to try and control their weight, and which may be missed by traditional assessment measures.”

Dr Moritz Herle, Lecturer at the IoPPN and joint senior author of the study, said:

“Our results highlight that not every person with an eating disorder fits the standard presentation outlined in diagnostic systems and questionnaires. Hence, we need to extend our ideas around weight loss behaviours to ensure that we are inclusive and develop support system to meet everyone’s needs.”

Dr Christopher Hübel, Child and Adolescent Psychiatry Resident at DRK Clinics Westend Berlin and Researcher at Aarhus University and joint senior author of the study, said:

“Our study suggests that some people with binge-eating disorder may be overlooked by current diagnostic guidelines, especially if they also try to lose weight. We heard from 81 participants who shared in their own words that they engage in weight loss behaviours—something not currently reflected in the standard criteria. This points to the need for a more flexible, dimensional approach to understanding eating disorders, rather than relying solely on strict categories.”

Suzanne Baker, Carer Representative F.E.A.S.T says:

“As carers and supporters of loved ones affected by Eating Disorders, we welcome this paper’s call for broader diagnostic approaches. We value the inclusion of lived experience in developing assessment tools that reflect the diverse behaviours we witness. Eating Disorders are not one-size-fits-all illnesses, and recognising this is key to creating personalised, timely, and effective treatments. It’s encouraging to see research that meets patients where they are, rather than forcing them into narrow definitions.” 

EDGI UK and GLAD are led by researchers at the IoPPN and NIHR Maudsley BRC as part of the NIHR BioResource for Mental Health.

The study received support from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) and NIHR BioResource.

The researchers note that almost 95 per cent of participants were female and 94 per cent were of White ethnicity. EDGI UK and GLAD are taking steps to improve representation.

If you or someone you know is struggling with an eating disorder, support is available. Contact Beat, the UK’s eating disorder charity, on 0808 801 0677 (adults) or 0808 801 0711 (youth), or visit www.beateatingdisorders.org.uk for information and support. 

“Beyond the Diagnostic Checklist: A large-scale analysis of under-recognised weight loss behaviours in individuals with eating disorders” (Saakshi Kakar, Una Foye, Helena L. Davies, Elisavet Palaiologou, Chelsea M. Malouf, Laura Meldrum, Iona Smith, Gursharan Kalsi, Karina L. Allen, Gerome Breen, Moritz Herle, Christopher Hübel) was published in the International Journal of Eating Disorders. DOI: 10.1002/eat.24477