Stephanie was told she would never get better. Now she’s at the forefront of treating her illness

For years, Stephanie Boulet was told she would never recover from anorexia nervosa. Enduring hospital admissions and residential care through her adolescence and 20s, the treatment – which assumed she was motivated by a desire to be thin – didn’t work.

“It is not fair that I was in that state for as long as I was, repeatedly reaching out for care and being called ‘treatment resistant’ and [my condition] ‘severe and enduring’,” Boulet said.

Stephanie Boulet has lived experience of anorexia nervosa and is leading efforts to investigate personalised treatments for eating disorders.Credit: Dominic Lorrimer

Evidence-based treatments for adults with eating disorders do not work for roughly half of patients, and there is no standalone evidence-based treatment for anorexia or other specific disorders, meaning clinicians rely on guesswork to find ways to help.

But a promising new US trial has found that a personalised treatment approach targeting unique combinations of symptoms for each patient led to a greater decline in symptoms compared to the current gold-standard treatment, enhanced cognitive behavioural therapy (CBT-E).

The results of the small randomised controlled trial, the first trial of personalised treatment for any mental illness, were presented at the Australian Eating Disorders Research and Translation Centre’s (AEDRTC) conference in Sydney last week. The findings are yet to be peer-reviewed.

Lead researcher Professor Cheri Levinson, director of the Eating Anxiety Treatment (EAT) Laboratory at the University of Louisville, said current treatments were based on averages that don’t account for the huge variations in the symptoms, behaviours, thought processes and characteristics of people with eating disorders.

“Patients with the same diagnosis can present with extremely different symptoms,” she said.

“Growing data shows that about 50 per cent of patients have weight and shape concerns as their central or most important symptoms, meaning 50 per cent do not,” she said, floating the concept of an “eating spectrum disorder” approach to diagnosis.

The trial used network analysis, a mathematical model, to characterise a large catalogue of eating disorder symptoms and analyse how they interacted for each individual.

Researchers sent short surveys to the phones of trial participants five times per day over 15 days.

“We asked them things like ‘how dissatisfied are you feeling with your body?’, ‘how anxious are you feeling?’, ‘how ashamed are you feeling?’ on a scale of zero to 100,” Levinson said.

The rising prevalence of eating disorders

• An estimated 1.1 million people in Australia were living with an eating disorder in 2023, according to a Deloitte report commissioned by the eating disorders advocacy organisation The Butterfly Foundation.
• There has been a 21 per cent increase in people with disordered eating behaviour over the previous 11 years, the report shows. 
• Anorexia nervosa has the highest mortality rate of all psychiatric disorders – approximately 20 per cent.

This information was used to build a symptom network for each participant to understand what was driving and maintaining their eating disorder, and provide a mix of therapies, including CBT-E, over 17 weeks of treatment.

“For example, if somebody’s central symptoms were shame, overvaluation of weight and shape, and social anxiety, their treatment module [could] include dialectical behaviour therapy that specifically focuses on challenging shame and guilt, thought challenging, and acceptance and commitment therapy for their weight and shape concerns, and social exposures for social anxiety,” Levinson said.

Professor Cheri Levinson presented data from the first randomised controlled trial of precision treatment for any mental illness in Sydney on Thursday.Credit: Jessica Hromas

One month after treatment, the personalised treatment group reported significantly larger declines in eating disorder symptoms and body dissatisfaction compared to the group that completed traditional CBT-E. Quality of life scores also improved significantly.

The new approach marks a shift away from one-size-fits-all therapies focused on a fear of weight gain, following decades of little progress for the millions of people with eating disorders who don’t neatly fit diagnostic criteria.

Boulet, now a provisional psychologist, is at the forefront of a Sydney-based, federally funded trial that will build on Levinson’s work.

“We are plopping these standardised [diagnostic] manuals on people, and it’s just not working for a lot of them,” Boulet said.

“It wasn’t until I found people willing to go off-script, who could see me, [and] understand me and what I needed, that I could be helped.”

AEDRTC director, clinical psychologist Associate Professor Sarah Maguire, said patients and carers had been telling clinicians they needed a personalised approach but had largely been ignored.

“What’s important over and above the finding of significantly improved outcomes for people who got the personalised approach is that they liked it and accepted it,” Maguire said.

“There has been an unspoken assumption that those two things were mutually exclusive.”

Maguire will lead the Sydney-based trial of personalised care for anorexia nervosa, the For Me Trial, adopting a similar approach to the US study.

Boulet said the trial would place the individual at the heart of the design of their treatment.

“The desire to be thin was absolutely not at the core of my eating disorder, but that would have certainly been the clinical picture and what the behaviours looked like,” she said.

“When we know that after 10 years, three will have recovered, one is dead, and seven are still unwell, we owe our young people better options and a better chance of recovery.”

Maguire is also involved in the world’s largest genetics study – led by medical research institute QIMR Berghofer – which aims to identify the genes contributing to a person’s risk of developing different eating disorders.

The Butterfly Foundation on 1800 33 4673 provides advice and support for people with eating disorders. Crisis support is available from Lifeline on 13 11 14.

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