Weight-loss behaviors are 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 behaviors that 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-recognized weight-loss behaviors in individuals with eating disorders. It identifies a range of behaviors 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 analyzed 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 behaviors 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 behaviors unless specifically prompted. They may not disclose behaviors in clinical interviews due to shame or stigma.

The researchers emphasize the need for better questionnaire-based eating disorder assessments to inform the detection of eating disorders, accurate diagnoses and appropriate personalized 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, Ph.D. student at the IoPPN and first author of the study, said,”As with all areas of human behavior, weight-loss behaviors utilized 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 behaviors to a more inclusive assessment process that expects and accommodates a wider range of behaviors. Working with people with lived experience will help ensure that these evolving behaviors are recognized 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, noted, “Clinicians know that not everyone with an eating disorder is the same—eating disorder behaviors can look very different across different individuals. This study highlights the wide range of behaviors 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, added,”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 behaviors to ensure that we are inclusive and develop a 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, observed, “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 behaviors—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 (Families Empowered and Supporting Treatment of Eating Disorders), acknowledged, “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 behaviors we witness. Eating disorders are not one-size-fits-all illnesses, and recognizing this is key to creating personalized, 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 National Institute for Health and Care Research (NIHR) Maudsley BRC as part of the NIHR BioResource for Mental Health.

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

Researchers at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London have identified a range of weight-loss behaviors that 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-recognized weight-loss behaviors in individuals with eating disorders. It identifies a range of behaviors 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 analyzed 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 behaviors 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 behaviors unless specifically prompted. They may not disclose behaviors in clinical interviews due to shame or stigma.

The researchers emphasize the need for better questionnaire-based eating disorder assessments to inform the detection of eating disorders, accurate diagnoses and appropriate personalized 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, Ph.D. student at the IoPPN and first author of the study, said,”As with all areas of human behavior, weight-loss behaviors utilized 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 behaviors to a more inclusive assessment process that expects and accommodates a wider range of behaviors. Working with people with lived experience will help ensure that these evolving behaviors are recognized 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, noted, “Clinicians know that not everyone with an eating disorder is the same—eating disorder behaviors can look very different across different individuals. This study highlights the wide range of behaviors 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, added,”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 behaviors to ensure that we are inclusive and develop a 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, observed, “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 behaviors—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 (Families Empowered and Supporting Treatment of Eating Disorders), acknowledged, “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 behaviors we witness. Eating disorders are not one-size-fits-all illnesses, and recognizing this is key to creating personalized, 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 National Institute for Health and Care Research (NIHR) Maudsley BRC as part of the NIHR BioResource for Mental Health.

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