New research highlights the flaws in EDP criteria, finding that the EDE-Q causes exclusion of a large portion of people with confirmed EDs.
Adolescents with Atypical Anorexia Nervosa (AAN) are falling through the cracks, according to Australian experts.
A recent study found 23% of young people with confirmed AAN were classified as eating disorder (ED) symptom non-endorsers, meaning they scored below 3 on the Eating Disorder Examination Questionnaire (EDE-Q).
For AAN, EDE-Q scores directly determine access to Medicare-funded treatment, said Dr Renata Almeida Mendes, lead author and Queensland Health research assistant at the Child and Youth Mental Health Service.
Many adolescents with AAN, whose weight may appear “normal,” may never receive subsidised care simply because they don’t score highly on a self-report questionnaire, she told The Medical Republic.
The study evaluated more than 200 people aged nine to 18 years old. The cohort was 92% female and included 166 participants diagnosed with AAN and 57 with AN. The sample was from a public specialist outpatient clinic, which Dr Mendes said typically sees more severe and complex cases.
“If even in this group one in four did not meet the EDP criteria, it is very likely that an even greater proportion of young people in the general community – especially those with emerging, milder, or less obvious symptoms – are being missed,” she said.
The findings of the study also confirmed previous research, which suggested around a third of individuals with AN may score within the normal range on the EDE-Q.
“What was new – and surprising – is that we found almost the same pattern in adolescents with AAN, a group that has never been studied in this way,” she said.
“The findings suggest a significant number of Australian young people with eating disorders may be falling through the cracks long before they reach specialist services.”
While the revision of the EDP criteria is a long-term solution, Dr Mendes said there are several practical steps GPs can take right now:
- Use clinical judgment alongside the EDE-Q, rather than relying on the score alone – especially when there are red flags like rapid weight loss, medical instability or strong parental concern.
- Consider collateral information from families, teachers and other clinicians, as young people often minimise or misunderstand their symptoms.
- Monitor growth charts and patterns of weight loss, which can be more informative than absolute weight.
- Refer early, even if the EDE-Q score is low, when there is clinical concern or functional impairment.
“The main message is if a young person or their family is worried, it is important to take that concern seriously even when screening scores appear low,” she said.
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“[AAN] can be just as medically serious as classical AN, and a “normal” weight or low EDE-Q score does not rule out a severe eating disorder.
“We would also like GPs to know that their roles are crucial as they are often the first and only point of contact, their clinical judgement is incredibly valuable, especially when screening tools don’t tell the full story, and early referral can save lives and it is ok to refer even when the presentation is complex or unclear.
“Finally, we want to highlight that this research was not conducted to critique GPs, but to draw attention to systemic barriers that make early identification of AAN challenging.
“Improving tools and criteria will support GPs, not burden them.”
For more information, Dr Mendes suggested InsideOut Institute and National Eating Disorders Collaboration, which provide high-quality, evidence-based training for GPs, as well as Butterfly Foundation.
