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 and funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre and the NIHR BioResource. It was published in collaboration with the eating disorder charity Beat. Both EDGI UK and GLAD are part of the NIHR's Mental Health BioResource.
The research explored the age of onset of regular episodes of binge eating and of low weight in 10,561 participants from the EDGI UK and GLAD studies. These symptoms were chosen because of their relevance to bulimia nervosa and binge eating disorder (regular binge eating) and anorexia nervosa (low weight).
More than half (52.9%, 4,260) of participants first experienced regular episodes of binge eating over the age of 18 whilst 60.2% (4,407) first experienced low weight over the age of 18.
The number of males with eating disorders were in the minority overall (less than 5%). The data showed that males represented 24% of those with onset below 10 years old and 14% of those with onset at 25 years of age or more. This suggests there needs to be more provision for boys and men of those ages with eating disorders.
This is the first research of this scale looking at the age of 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 means 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 starting in childhood or adolescence. However our study indicates that there a majority of people may experience eating disorders for the first time when they are adults. This in no way takes away from the absolute importance of addressing eating disorders in young people but it does indicate that policy-makers 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 securely collecting data 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 and Rapid Early intervention for Eating Disorders, may lead to better outcomes.”
Dr Agnes Ayton, chair of the eating disorder faculty 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, funded by the National Institute for Health Research (NIHR) Maudsley Biomedical Research Centre and NIHR BioResource, 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, part of the NIHR BioResource, is also seeking volunteers aged 16 and over with symptoms of anxiety or depression. Register online at gladstudy.org.uk.
The labels have been added to this press release as part of a project run by the Academy of Medical Sciences seeking to improve the communication of evidence. For more information, please see: https://www.sciencemediacentre.org/wp-content/uploads/2018/01/AMS-press-release-labelling-system-GUIDANCE.pdf
About the National Institute for Health Research (NIHR)
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About King’s College London and the Institute of Psychiatry, Psychology & Neuroscience
King's College London is one of the top 35 UK universities in the world and one of the top 10 in Europe (QS World University Rankings, 2020/21) and among the oldest in England. King's has more than 31,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and 8,500 staff. King's has an outstanding reputation for world-class teaching and cutting-edge research. The Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s is the premier centre for mental health and related neurosciences research in Europe. It produces more highly cited outputs (top 1% citations) on mental health than any other centre (SciVal 2019) and on this metric we have risen from 16th (2014) to 4th (2019) in the world for highly cited neuroscience outputs. World-leading research from the IoPPN has made, and continues to make, an impact on how we understand, prevent and treat mental illness and other conditions that affect the brain.
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About the NIHR BioResource for Translational Research
The mission of the National Institute of Health Research (NIHR) BioResource is to facilitate human health research and its transformation into medical practice. The BioResource is an NIHR initiative established at 13 local Research Centres – Birmingham, Cambridge, Exeter, Leeds, Leicester, London – includes Barts Health, GSTT, Maudsley, Moorfields and UCL, Manchester, Newcastle and Southampton. The NIHR BioResource is at the heart of efforts to improve healthcare and the long-term prevention and treatment of disease. More than 200,000 participants, both with and without health problems, have already joined the NIHR BioResource to help transform the genetics of health research. The enthusiasm, commitment and contribution of NIHR BioResource participants help its researcher partners in academia, industry and NHS to uncover the causes of disease
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