Published: 24 May 2022
Patients’ lives at risk from anorexia nervosa
Anorexia nervosa is a severe, life-threatening eating disorder and psychiatric illness that typically develops in younger women but can affect people of all ages. Up to 4% of women and 0.3% of men in the UK are affected by anorexia in their lifetime, accounting for potentially up to 1.4 million people who are at risk from the serious physical, emotional and social consequences of their condition. Patients with anorexia may develop organ damage and loss of bone strength, and commonly experience depression, anxiety, low self-esteem and self-harm. Anorexia is associated with the highest risk of death of any psychiatric disorder.
Early diagnosis of anorexia nervosa and rapid access to effective treatment and care services are vital, as there is some evidence that full recovery becomes less likely the longer a patient remains untreated. Despite its risks and severity, for many years there had been little evidence on how best to treat anorexia, and many parts of the UK lacked specialist NHS eating disorders services.
In 2004, NICE published its guidance on the treatment and management of eating disorders, in which it recommended key areas for research to improve knowledge of and treatment for eating disorders. In response to this, NIHR Programme Grants for Applied Research (PGfAR) awarded £2.2 million funding to researchers at the NIHR Maudsley Biomedical Research Centre (BRC) to support their development of more effective treatments and care for anorexia nervosa at all stages of the illness, from prevention and diagnosis through to treatment and preventing relapse.
This NIHR Programme Grant was the first large-scale funding of its kind, focusing on achieving much needed improvements in treatment of anorexia nervosa and the associated evidence base, through translating neurobiologically based models and findings into scalable treatments for the NHS.
Professor Ulrike Schmidt, lead researcher for the study
Developing new approaches to improve treatment
Led by Professor Ulrike Schmidt, Consultant Psychiatrist at South London and Maudsley NHS Foundation Trust (SLaM) and Professor of Eating Disorders at King's College London (KCL), the research team developed a programme of research studies that covered a range of areas of need, with the studies planned to inform each other and help develop a broader understanding of anorexia nervosa treatment requirements from the earliest stages of illness.
The research programme included developing and testing interventions to treat and support patients with anorexia nervosa. These projects were planned alongside studies on prevention and early identification of eating disorders in schools.
Studies of people with anorexia’s physical activity levels, the growth and diet of their children, and fertility problems in women were also included to inform their future care. Finally, the programme included cost-effectiveness studies to understand how eating disorder services were used and to estimate the cost of eating disorders to the NHS, patients and their families.
People with anorexia, their families and charity representatives shaped the research questions, and the then chief executive of Beat, an eating disorder charity, played an active role on the research team and was a co-applicant for NIHR funding.
One of the new interventions co-developed by Professor Schmidt and her colleague, Professor Janet Treasure, Clinical and Academic Psychiatrist at SLaM and KCL, was a psychological therapy for adults who needed outpatient care, known as the Maudsley Model of Anorexia Nervosa Treatment for Adults (MANTRA). This model is centred around a workbook consisting of nine core modules. The treatment uses a type of talking therapy called motivational interviewing to encourage patients to discuss their behaviour in relation to anorexia and help them understand and change harmful behaviours.
The research team carried out a randomised controlled trial to investigate how effectively MANTRA treated patients compared with usual treatment. The results for MANTRA and usual treatment were promising, with both study groups achieving significant improvements in body mass index. However, the findings, published in the Journal of Consulting and Clinical Psychology, showed that patients considered MANTRA to be the more acceptable treatment after 12 months.
NIHR PGfAR and the NIHR Research for Patient Benefit Programme then funded a follow-up study to assess the ongoing benefits of MANTRA 2 years after treatment. This research, published in the International Journal of Eating Disorders, found that the patients’ average weight had increased by 6kg and 83% did not need hospital admission or any other intensive treatments.
Absolutely, definitely feel a bit more comfortable within myself, you know I was feeling very hopeless going back to sort of this time last year… but sort of since working through those issues I’ve managed, I’m actually in a different job now… and I’m a lot happier there and I’m going out and doing more things.
Patient with anorexia nervosa who received the MANTRA treatment
The researchers also showed the benefits of developing families’ and carers’ skills to help care for patients with severe anorexia nervosa. The Experienced Caregivers Helping Others (ECHO) intervention, which was co-produced with families of inpatients, provides carers with information about anorexia and how to provide patients with effective support. A randomised controlled trial of ECHO involving 178 in-patients and 268 caregivers found that this approach reduced eating disorder symptoms and improved quality of life in people with anorexia. A follow-up study 2 years later found that patient readmission to hospital was reduced by 20 days over 2 years, saving the NHS £10k–14.5k per patient.
Influencing practice to improve patients’ lives
This programme of studies has greatly improved practitioners' understanding of how best to help individuals with anorexia nervosa and is transforming the care of patients. In the 2017 NICE guidance on the recognition and treatment of eating disorders, MANTRA was recommended as one of the three first-line psychological treatments for outpatient adults with anorexia, which led to a high demand for training in the UK and internationally.
Around 950 eating disorder healthcare practitioners have received advanced MANTRA training since 2016. A 3-year contract with Health Education England, beginning in 2022, will train up to 90 experienced mental health professionals across England each year. This will ensure patients who access eating disorder services benefit from evidenced-based interventions and, as Professor Schmidt explained: “Ultimately, this means that patients will be able to choose from different treatment options suited to their needs.”
The ECHO approach for supporting carers of people with anorexia nervosa has been widely implemented around the UK, with more than 1450 carers and therapists benefiting from training. It has also been adopted in a peer-coaching format by Beat. Tom Quinn, Beat's Director of External Affairs, said: “One way in which this research has impacted Beat directly is through our ECHO Peer Coaching service. Based on this trial’s findings, Beat offers ECHO Peer Coaching for those in the North West and the East of England.”
This investigation has had a real impact on the field of eating disorders on many fronts. ECHO has been described by a parent as ‘my lifeline … my ECHO coach is the only person who has an understanding in this horrifically difficult situation’.
Tom Quinn, Director of External Affairs, Beat, an eating disorder charity
The research team’s analysis of specialist care pathways for adolescents with anorexia nervosa showed that assessment and treatment in specialist services was by far more cost-effective than non-specialist services. This finding directly influenced the government’s investment of £41 million per year into dedicated community-based eating disorder services for children and young people. Seventy-seven community-based services now exist across England and provide early intervention services for patients referred by the NHS.
Taken together, the findings from this research programme have facilitated a major step change in eating disorder treatment, research and policy.
Professor Ulrike Schmidt
Professor Schmidt said: “The research has had a very significant impact on NICE and other international guidance, has served as a springboard for further large-scale research collaborations and has led to important investment in services. The programme has also led to significant researcher capacity building and over 100 peer-reviewed publications”.
- This research was funded by NIHR Programme Grants for Applied Research and NIHR Research for Patient Benefit. The research was supported by the NIHR Maudsley Biomedical Research Centre, a partnership between South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, Psychology and Neuroscience at King's College London.
- More information about the PGfAR research and the RfPB study is available on the NIHR Funding & Awards website.
- Read more Making a Difference stories.