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Eating disorders are just as likely to start in adulthood as childhood, EDGI report finds

Over half of the people with eating disorders experience their first symptoms of low weight or binge eating as adults, while 39 per cent first recognise bulimia related symptoms when they are over 18, a report based on almost 9,000 UK participants has revealed. According to researchers, this highlights the need for a greater range of services, including those aimed at people who first experience eating disorders later in life.

The report uses data from the UK Eating Disorders Genetics Initiative (EDGI UK) and Genetic Links to Anxiety and Depression (GLAD) studies, led by researchers at King’s College London. Both are funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre and the NIHR BioResource. The report is published in collaboration with the eating disorder charity, Beat.

The research explored the age at onset of regular episodes of eating disorder symptoms in 8,945 participants from the EDGI UK and GLAD studies, specifically binge eating, low weight and purging behaviour (i.e.laxative use, diuretic use, and self-induced vomiting). These symptoms were chosen because of their relevance to binge-eating disorder (regular binge eating), anorexia nervosa (low weight), and bulimia nervosa (regular binge eating; purging behaviour).

More than half (52.7 per cent) of participants first experienced regular episodes of binge eating over the age of 18 whilst 57.5 per cent first experienced low weight over the age of 18. Additionally, 39.3 per cent of participants first engaged in purging behaviours when they were over the age of 18.

The number of males with eating disorders were in the minority overall, less than 6.5 per cent. However, the data showed that males represented 30 per cent of those with onset of low weight below 10 years old. Additionally, males represented 13.2 per cent of those with onset of binge eating at greater than 25 years and 8.4 per cent of those with onset of purging behaviour at greater than 25 years.

This suggests there needs to be more provision for males with pre-pubertal and adult-onset eating disorders.

This is the first research of this scale looking at the age at onset of eating disorders in the UK. The study is unique in that it draws on data from both an eating disorders study (EDGI) and data from eating disorder cases in the world's largest study of severe anxiety and depression (GLAD). By incorporating data from GLAD it captures many more individuals with binge eating who usually would not take part in ‘eating disorders’ studies.

Gerome Breen, Professor of Psychiatric Genetics at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King’s College London and scientific lead for EDGI UK, said: “There is a tendency to see eating disorders as mental health conditions that primarily start in childhood or adolescence. However our study indicates that there are just as many people who experience eating disorders for the first time as adults. This in no way takes away from the absolute importance of addressing eating disorders in young people but it does indicate that we need to think more broadly about the range of people affected by eating disorders and their different needs.”

Professor Breen continued: “The EDGI project is collecting data anonymously from people with eating disorders with the aim of trying to fully understand the different risk factors at play so we can develop better ways to support different groups of those with eating disorders. The more people that take part in the EDGI study the more we can increase our understanding and inform services.”

Beat's Director of External Affairs, Tom Quinn, said: “This research provides further valuable evidence that many people first develop an eating disorder in early adulthood. This – along with rising referrals – highlights a clear need for much greater investment in eating disorder services for adults in every part of the UK.

“Everyone affected by an eating disorder needs rapid access to high-quality treatment in their local area. It is essential that these services are properly funded and healthcare professionals provided with sufficient training to spot the first signs of an eating disorder, to support appropriate referral for a specialist assessment. Receiving treatment at the earliest opportunity gives the best chance of recovery and also allows resources to be better utilised, meaning more people can be seen early in the development of their eating disorder and fewer people needing crisis services or hospital admission.”

Janet Treasure, Professor of Adult Psychiatry at the IoPPN, King’s College London, said: “Services for eating disorders are currently undergoing a transformation in order to better fit the need. Many people with eating disorders are currently unable to access services and so information such as this is invaluable as a means of optimising treatments. For example targeting interventions which include families or the close social network early in the course of the illness, such as First Episode Rapid Early Intervention for Eating Disorders (FREED), may lead to better outcomes.”

Dr Agnes Ayton, chair of the Faculty of Eating Disorders Psychiatry at the Royal College of Psychiatrists, said: “These findings challenge the untrue stereotype that eating disorders only happen to teenage girls. They can happen to anyone of any age yet adults are often let down because services are ill-equipped to treat the number of people needing help.

“The pressure on the frontline is huge. Adults are forced to wait too long for potentially life-saving treatment, with some waiting up to two years for the care they need.

“The government and NHS England must do more to deliver parity between adult and child and adolescent eating disorder services. This must start with urgent funding reaching the frontline to ensure more adults and children can get the timely treatment they need to prevent suffering, dangerous complications and avoidable deaths.”

The EDGI UK study is the UK’s largest ever genetic research project into eating disorders. The study opened in February 2020 and it aims to collect the psychological, medical and genetic information of 10,000 people with experience of an eating disorder.

This will help researchers to better understand the role genes and environment play on the development and treatment of these illnesses. It is part of an international collaboration, with other countries coming together as part of the same initiative.

The study has so far recruited more than 3,000 participants. People in England aged 16 or over who have experienced symptoms of an eating disorder can sign up by registering online at edgiuk.org.

The GLAD study, led by the NIHR Mental Health BioResource, is also seeking volunteers aged 16 and over with symptoms of anxiety or depression. Register online at gladstudy.org.uk.

We need to ensure that everyone affected by an eating disorder can rapidly access high-quality treatment in their local area when they first reach out for help. A referral must not mean many months spent on a waiting list. At Beat, we've drafted a letter that you can send to your MP to let them know that this needs to change, and that we need their help to end the wait for the millions of people affected by eating disorders in the UK. Sign the letter here.

Read the full Age of Onset report here.