The outcomes of scientific research in child and adolescent psychiatry is rarely embraced by all stakeholders – yet, professor Beate Herpertz-Dahlmann at Aachen University (Germany) managed to satisfy the whole chain of parties involved in anorexia nervosa (AN): patients and practitioners and funders. Herpertz-Dahlmann will present the outcomes of her follow-up study as a keynote speaker at the upcoming ESCAP conference in Madrid.

Her break-through study – first presented at the ESCAP 2013 Congress in Dublin and then published in The Lancet, in 2014 – literally opened doors for patients. The adolescent AN patients were offered a stepped care treatment with much greater emphasis on day patient care – and they found it a lot more agreeable. Practitioners experienced a better-balanced and more effective care, including for example the involvement of the patients ‘home base’ to ‘exercise’ normal eating routines and social behaviour. And even funders could be contented with the prospect of some twenty per cent cost reduction.

Fear of medical risks
The results were surprisingly positive, also to the researchers themselves. The research team at Aachen University started the study, not knowing whether outpatient care or day patient care would be a good idea at all. “Quite a number of colleagues criticized our experiment beforehand”, says professor Herpertz-Dahlmann. “Some doctors were afraid that that we were taking great risks, that somebody might die during the process or other serious medical events… But nothing of the sort happened and the effect of our treatment proved to be better than the figures of the usual approach.”

Herpertz Dahlmann does understand the initial worry of her peers: “They know as well as I that anorexia nervosa is a very serious disease for adolescents, with a mortality ratio even higher than that of of juvenile asthma or diabetes Type 1. Anorexia carries the highest mortality risk of  any psychiatric disorder and overall it is even the third most common chronic illness in adolescents.”

Differences between adults and adolescents
“We interpreted this seriousness of the disease as an important reason to find a treatment that most patients would agree to, and that would be also more effective than the common methods. One of the big problems was that young people do not feel that it is necessary to be treated in hospital. Their perception that staying at home is just as good would have a strong influence on the treatment. This had been suggested before by another study by Guarda and Pinto et al. where the adult patients said that the inpatient treatment was hopeful for them, while the adolescent patients – even after four or six weeks – said that the same treatment was not doing them any good. These differences between the adult and the adolescent patient were one reason for us to approach these adolescents in a manner that could be more agreeable to them. The other reason was that the adolescent patients often do not have a lot of social competence. That goes so far that during the acute phase of the illness, they even seem to have autistic traits – they have a very bad central coherence for example, they are focusing on details and they are not able to maintain friendships with other young people. Only when the starvation vanishes, some of them almost immediately improve their social behaviour, while others remain socially phobic. I would say a double diagnosis of social phobia is very common. Since Maria Rastam and Elisabeth Wentz  came up with their studies on the comorbidity between eating disorders and autism and the social communication of these patients, there have been several studies about these autistic components which are especially difficult during the acute phase. We thought: if they do not have enough social competence, it is not good to hospitalize them for a long time.”

Day patients stay happier
So day patient care seemed a good idea for social reasons?
“These patients tend to stay happier because they keep contact with their families and with their peers, and in addition they have much more opportunity to exercise eating at home. So the day patients have the chance to maintain their social networks, and the other important thing is that they can exercise eating in a trusted environment with their parents, brothers and sisters, although parents are often not able to set an example because they are overinvolved in their daughter’s eating disorder.”

At the ESCAP conference in Dublin, Dr Dasha Nicholls said that a stepped care model would be very appropriate for these treatments. In addition to that, your study says that a stepped care model could also be much more economic.
“Yes the treatment that we exercised for this study was following a stepped care model. We started with inpatient treatment, but only for three weeks – which in Germany normally takes about twelve to fifteen weeks – because during the first weeks the somatic danger for anorectic patients is rather high. I am talking about the risk for cardiac failure because of the refeeding syndrome and acute pancreatic affection for example. That is why it is always sensible to keep patients hospitalized for the first few weeks, no matter what model is used. But after that we proved that day patient treatment is very well possible, in the way indeed that Dasha Nicholls had proposed. And yes: during this second part of the treatment we were able to save a lot of money.”

As a way to meet governments, striving to cut down on psychiatric budgets?
“Yes, but there were several reasons. One reason was that anorexia nervosa treatment brings along very high costs, even similar to schizophrenia or obsessive-compulsive disorder. But first of all I find that it is unwise to have these young people in inpatient treatment without organizing any help once they go back home. I wanted to improve and smoothen the shifts from inpatient treatment to day patient treatment to outpatient treatment. I feel that we should offer these adolescents more than automatically calling them in for inpatient treatment only, like we have done traditionally for many years.”

International scope
Do you think that your findings may change the future of anorexia nervosa treatment?
“Well, I very much hope that this will bring some change. In Germany and also in a number of other European countries clinicians have heard of this study and they ask me to talk about the paper and about the implementation of this new treatment model. In the course of 2015 I will for example talk to a group of Italian doctors who want to practice this treatment. I am happy to have received many enthusiastic reactions from practitioners. At this moment the treatment is very varied all over Europe and of course we ask ourselves why that is – to start answering that question we are preparing an article for the ECAP Journal and a symposium at the ESCAP 2015 Congress, together with Ulrike Schmidt from the UK, Annemarie van Elburg from the Netherlands and Josefina Castro-Fornieles from Spain. Here we want to discuss the different ways of treatment in different countries and especially why in some countries patients are almost always treated in hospital – like in the Netherlands and Germany – and in other countries it is even quite difficult to get inpatient treatment at all. In England for example the BMI rates at admission to hospital are now quite a bit lower than some years ago. One may think that this is purely a matter of economics, but on the other hand our 2.5 years follow-up study shows that the day patients show a significantly higher BMI after treatment than the inpatients. So it is both the effect and the economics that count. These outcomes have not been written yet, but we will present them in Madrid.”

Neurobiological research
You are optimistic about changing anorexia treatment for the better?
“Yes and I am very happy with the outcomes of the follow-up study because this proves that we were right to choose for day patient treatment. I sure hope that many clinicians will read about the study or come to Madrid to discuss it. After that there will be the long road to implementation… But there is also a lot more research work to do, for example on comorbidities between eating disorders and other psychiatric diseases and also in neurobiological research.”

The research results of your colleagues, Kerstin Konrad, who will also present in Madrid, and Josefina Castro-Fornieles refer to a study by Mainz et al. on the neurobiological components of eating disorders suggest that these patients may develop a kind of cerebral atrophy.
“Yes, this study indicates that these patients may develop some kind of biological scars caused by the eating disorder. We found for example that sexual hormones like oestrogenes are necessary for the growth of important parts of the brain. Since patients with anorexia nervosa have a very severe deficit in oestrogenes, they do not menstruate any longer. When we look at their brain, we see that certain brain regions – like parts of the amygdala – do not grow as much as they should during adolescence. For me and for my co-workers this will be a challenging research area for the coming years, to look how we can perhaps improve the growth of brain tissue during these oestrogene difficient periods.”

Hormonal effects
 Many researchers rightly say that we need to perform a lot more research in the neurobiological field and we need much bigger samples to really understand how this is functioning. For now, the neurobiological research related to eating disorders that has been done to date is no more than a drop in the ocean. There are many more complicated hormonal effects that we want to know about – more than just determining that they are difficient in anorectic patients. And there are still many other factors that could be of enormous importance. In one of her last articles Ulrike Schmidt even talks about ‘brain-based therapy’ for anorexia nervosa. You could well say we are pioneering in this field.”

Do we need an international approach to tackle this problem and improve the treatment of eating disorders?
“Yes we do. Or at least a European one. If we could just decide that we have common aims and realize how much good treatment matters, we could fight for that in different countries. This would have much more impact, in the interest of these young patients, than all of us just working for our own ideas in our own countries. For example, in Madrid we will be organizing another symposium on the outcomes of treatment in different countries with contributions from international researchers who focus on eating disorders.”

Policy aspects
It seems that the most important research efforts are made in these very specialized groups, while ESCAP plays a more general role. What do you think ESCAP could add to this specialist’s work?
“I think that ESCAP could have a very important role to get these experts together. For example by arranging specialized meetings within the ESCAP framework. And while these specialists do their research in their relative isolation, ESCAP could adopt the policy aspects of it and help create programmes in different countries. ESCAP could also play a part on the clinical side and try to implement treatments that have already proven to be effective.”

“But also in the field research ESCAP could very well help to join forces in child and adolescent psychiatry. I cannot understand why the United States are still dominant in the research of eating disorders. The knowledge that is available in Europe is at least as important – only it is too scattered. But I sure would not like to adopt US health care – the guidelines are of good quality, but not many patients will profit from them. Treatment there is very short and practitioners are often governed by insurance companies instead of by the wellbeing of their patients, even when they are very ill and even when they know they will have high re-admission rates caused by those brief treatments.” (Halmi et al 2009, Willer et al. 2005)

Obstacles to uniform guidelines
So European clinical researchers should join forces. Where exactly should they begin? Would it be feasible to start with developing European guidance for the treatment of eating disorders?
“That would be fantastic. You are absolutely right – we need uniform European guidelines and we still do not have them. And I am afraid we are still quite far away from that. Even in Germany it seems very difficult to have one guideline accepted because we have different expert groups in different disciplines that all have their own ideas. We have those working in their own practice, we have the ones that are working in hospitals and we have psychologists and medical doctors that all have different opinions. And to have this coordinated on a European level will be even more difficult. But we do have to work in this direction, of course. I would certainly aim for European guidelines and I will be happy when they finally appear on the horizon. In our ECAP article by four co-authors from four different European countries we will present and compare the clinical guidelines from all these countries and try to formulate recommendations.”

You do not seem very optimistic about European collaboration. Is there any light at the end of the tunnel?
“I must say that the upcoming ESCAP congress in Madrid brings in some optimism. It is so profoundly encouraging to see how strongly European colleagues are working together in the preparation of ESCAP 2015. I have never seen the European network of child and adolescent psychiatry profile itself so much as one network. This, I must say, shows real progress and that makes me hopeful. Luckily the dominance of West and Northern European experts has disappeared. All of the three symposia on eating disorders that we are doing are actually prepared by experts from a much wider range of European countries. It is Stephan Eliez – who is in the programme committee – that has achieved this. I must give him the credits for boosting European collaboration and involving not only experts from the usual countries. This is a novelty and a really fresh and new development for us. He encourages the participation of different nationalities both in symposia and in writing articles for our scientific journal. And everybody seems enthusiastic about it  – even the most famous researchers were immediately prepared to work together. In Madrid we will demonstrate the strength of pan-European opinions and that will bring us together. That is a really great thing.”

Read the abstract: New developments in the diagnostics and treatment of adolescent eating disorders (Madrid, 2015).
Read more about the study on day patient treatment by Beate Herpertz-Dahlmann (The Lancet).
Neurobiologic findings: view the abstract by Johannes Hebebrand.