Putting the evidence first – a conversation about Family-Based Treatment for youth with anorexia nervosa and why it takes three to aim high

Since March of last year, we are training a second cohort of Charité colleagues in FBT. And we’ve now advanced to not just training the second cohort, but also to train the trainers, that is, in-house clinicians who will be doing much of this work going forward – not just at the Charité, but hopefully in other parts of Germany. It is rewarding to observe how this interest has developed across German-speaking Europe and beyond.

We’ve now been invited to the final round of a very large German grant. If this funding is awarded, it will be the largest treatment study for adolescents with a restrictive eating disorder ever conducted. It will be a sea change if the findings from our pilot study, which showed that there are no differences in key outcomes between FBT and inpatient treatment for the 60 patients who participated, can be confirmed. As I mentioned, to date, and in Germany, hospitalization is so often seen as the first-line treatment.

Dr. Haas, can you describe what it was that you were skeptical about when you first started thinking about implementing FBT in Germany? Did your concerns center on questions of implementation or, more profoundly, on efficacy?

Haas: In 2018, I was visiting my colleagues in Sydney, a department where they have been doing FBT for more than ten years. The whole team there was trained in FBT, it was the department’s whole focus – no questions asked whether this is the right thing to do. I thought of the department in Berlin where no-one had been trained in FBT and where people actually didn’t know anything about this form of treatment yet. I wondered where to even start upon my return. That was my skepticism; but we made huge progress in the last four years and in some ways it was much easier than I had thought. Of course, we’re also encountering obstacles that we are still trying to overcome. Yet I feel less antagonism from clinicians than I had thought I would, you know, with FBT being a new concept. I thought people would find it much harder to take on board.

Le Grange: Can I add to that? Because I don’t think this is unique to Germany necessarily. In mental health, there’s a school of thought that ascribes psychopathology to early relationships with your parents; they shape your psychological makeup. The whole long history of psychodynamic psychotherapy or psychoanalysis puts the emphasis on the individual to go back to all these historical pieces that may help you. There's a long history of this worldwide and so in the treatment of anorexia nervosa (AN), there’s friction between that school of thinking in mental health versus a more pragmatic behavioral approach and saying, okay, we’ve got to move here: this young person is losing a kilogram each week. We’re dealing with an illness that has life-threatening medical consequences. I think that that is what in part Verena is alluding to.

Correll: It’s not just the child that is put in the center, but also the mother. We developed this damaging idea of the psychogenic mother causing schizophrenia in the past, and the persistent idea that bad family relations cause AN is similar, and made parents feel quite guilty. Therefore, it seems important to medicalize this disorder, be that through genetic research or by implementing this trailblazing approach in Germany, Austria and Switzerland.

You may ask yourself, and reviewers have asked us this as well, why do another study on FBT? There are ten randomized controlled trial studies (RCTs) examining the value of FBT already. Importantly, what we’re doing is the first study worldwide to compare FBT against inpatient care. So far, FBT has always been compared against outpatient care. When looking systematically at the literature, Verena Haas found that the patient groups that have been studied so far in FBT studies are not as underweight or acutely unwell as patients scheduled for hospitalization in Germany. The response from heads of departments of inpatient units here in Germany was therefore, rightly: These are great findings, but they do not apply to our patients. Our patients with AN who require hospitalization are very sick and some are at risk of dying. So that’s where this pilot study is so unique, because we were able to enroll a similar cohort of patients that would have otherwise been admitted to hospital wards in our health system.

Le Grange: I want to just add to what Christoph has said about the schools of thinking that are out there and Christoph’s point about the parents being blamed, the mother in particular. The consequence is that parents are excluded from the treatment process, whether it’s schizophrenia, autism or, in this instance, eating disorders. Simply put: the parents are to blame and they’re bad people. And so you hospitalize the kid to remove them from these bad people who’ve caused the psychopathology. FBT really swings the other way around, emphasizing that this is not helpful thinking. There’s no evidence for this modus operandi. The parents, in fact, are the best resource, and that’s why the treatment is so focused on helping them to figure out how to support their children. The idea very much is to keep young people out of the hospital.

Yet it would be clinically naive to think that you can keep every kid out of the hospital. There certainly are cohorts who need to be on the wards: those who are medically unstable but also those who are psychiatrically unstable. The latter may be doing okay weight-wise, but they become acutely suicidal or self-harm, or fail in outpatient treatment in the sense that they don’t progress. However, a significant number of kids diagnosed with AN can and should be treated as outpatients where the parents are the primary agent of their recovery. So we need to figure out who goes inpatient and who stays outpatient. We do this based on certain clinical parameters at the initial assessment, and later on as well: when you’re outpatient and you don’t meet certain markers in a certain time period, you may have to go inpatient temporarily.

The field has not been sophisticated enough to match patient with treatment modality in a more refined way. The health care system slaps the same thing onto everyone. I want to be clear that I don’t believe FBT should be slapped onto everyone, or I would make the same mistake as the proponents of inpatient treatment. But I know that our parents and kids deserve us to be smarter in our treatment implementation. The pilot study already is pointing us in that direction but the larger RCT will certainly allow us to be much more sophisticated in that decision-making process in the future.

Correll: Something we’re struggling with at the moment to implement here is a degree of flexibility in the treatment. Say a teenage girl affected by AN might best be treated as an inpatient for a brief period of medical stabilization. Then she returns to her usual environment where she’s healing and living, rather than stabilizing on the unit before going into the outpatient setting where her parents don’t know how to handle her eating, and where she may have a greater likelihood of relapse. But in pediatrics, they don’t have those flexible beds. They’re basically overrun by patients with other problems and may need to discharge patients with AN too early. And then the currently available outpatient care that does not consist of FBT may not be sufficient. It’s a dilemma.

Professor Le Grange, could you explain FBT’s three phases to our readership, please?

Le Grange: I’ll give you more than the elevator pitch – but the elevator pitch first: FBT is helping the parents do what nurses would have done had your child been admitted to a specialist inpatient eating disorders unit. It’s basically helping the parents to do what parents do well, which is to take care of their kids. Most other disorders, I think, do not get parents to question their own capacity to the same degree as one that boils down to their child not eating. These parents feel they failed where just about every other parent succeeds, which is to feed your kid.

Eating disorders are ego-syntonic disorders, which means that the young person defends the illness, doesn’t appreciate how unwell they are. And the parents, unfortunately, often get trapped in that, as many clinicians do, not appreciating that this young person doesn’t quite understand what’s happening here and the degree to which they’re putting their lives at danger.

FBT is primarily a reinvigoration of the parents to find a persistent yet supportive way to make sure that their child eats what they need to eat to achieve nutritional rehabilitation. With weight recovery comes cognitive recovery. That’s phase one. With that recovery in place, in the second phase of treatment, the adolescent is reengaging with adolescent development at their appropriate trajectory. By the time you get to the third phase of treatment, you are looking at the relationships between the adolescent and their parents, and the adolescent and their peers unencumbered by the eating disorder.

In phase one, in a very behavioral way, we support the parents to figure out what amount of food it takes to help someone gain about a kilo a week. How do you support the adolescent, who’s going to say, “No, I’m not going to do any of that”? So a very behavioral, supportive strategy is needed here for both the young person and the parents. The way I have described it above sounds a little schematic. It shouldn’t be, it should be adapted to the context of this family who struggles. There’s a whole set of dynamics that either help or hinder them in this process of weight gain. Usually, if someone starts at about 80% of the median body mass index (BMI), by the time they get to around 90% of median BMI, their thinking begins to recover or to change, rather. The adolescent is then ready to begin to make some choices again by themselves, under parental supervision. That’s the second phase: trying to hand the management of eating back to the young person in an age-appropriate way and then to reintroduce them with a peer group, which they’ve had to withdraw from as they became unwell. The parents have to usher them back into that process. By the time you’ve made significant gains in those domains, you get to the third phase of treatment, where you focus on the domain of adolescent development beyond the eating disorder. To what extent is the adolescent prepared for that ongoing growth? It will not be problem-free because adolescence is not problem-free, but ideally, they’ll be in a much better place physiologically and psychologically to manage those struggles – with the appropriate parental engagement, and again, developmentally appropriate. That’s a brief summary.

Thank you. This sounds so holistic and seems to make so much sense. And yet you can’t just go, “let’s restructure the health system so that this finally works the way it should” – or can you?

Correll: In Germany, the insurance companies currently only reimburse two treatments, and that’s either cognitive behavioral therapy or psychoanalytic-/ psychodynamic-informed therapy. FBT is not reimbursed. So what we’re trying to do, and that’s happening very rarely indeed in one’s academic life, is to do a study that will lead to guideline alterations where FBT becomes standard of care, not just on paper but in practice. It will have to be reimbursable. It’s also why the innovation fund application alluded to earlier is so important for us, because insurance companies are now working very closely with Verena Haas to bring about this five- or six-million-euro study.

All fingers crossed!

Now, eating disorders are ubiquitous. We know prevalence is high in women and teenagers especially, and we have certain ideas and clichés in our minds about who is at risk to become anorexic or how the illness plays out. What would you say are the three least-known facts about either eating disorders or anorexia nervosa in particular? What bugs you the most?

Le Grange: What bugs me the most is probably a reluctance in many quarters of our field to embrace science and the data. I am not for one second saying that we must have unambiguous support for FBT as the only way. It’s simply the strongest evidence-based treatment at this point in time. I hope that there will come a point where there are three or four strong treatments with strong research evidence so we can be smarter in the treatment we offer patients, tailor them to the individual better. As a field, sadly, we as eating disorder professionals can be reluctant to embrace science.

I would also like to encourage colleagues to not always try and reinvent the wheel. I think that can be a bit frustrating. For instance, we don’t have to re-define how we define remission afresh at the outset of a new study. While the prior definitions may not be perfect, starting there at least, will allow us to compare results across studies. And lastly, research into eating disorders has been very slow at jumping on the neuroscience train. I believe it’s neuroscience that will help us understand this brain disorder better than we do today. It can be frustrating to describe eating disorders as multifactorial without being able to explain the detail of those factors contributing to a person developing an eating disorder.

Haas: What bugs me the most is a person who has a very simple and single explanation for the origin of an eating disorder. I have encountered people who claim, “Oh, it’s an autonomy conflict”, or, “Clearly, it’s the mother”.

Le Grange: Yes, I agree. People would say: “It’s all about control”, or “It’s zinc, you need zinc supplements.”

Haas: Yes! People seem to desire that one explanation. But it’s far more complex.

Correll: I am coming to this question as a prevention scientist. I am originally an adult psychiatrist and then trained in child psychiatry to prevent psychosis, prevent mania. And now I’m also very interested in preventing AN. I ask: where is the deviation from struggling with one’s weight, and dieting and being obsessed with being slim – all of which is culturally embedded today – to developing AN? There is a link between AN and psychosis. There is an ego-syntonic part in psychosis: “I’m not sick, you are sick.” It’s the FBI wanting to exchange my brain. Patients with AN also do not think that they are sick.

Clinicians dealing with patients with AN have been using a string test. You ask the patient to put a string around what they think their body shape is, and you let them step inside. And it’s a huge difference between the large circle and the small body – yet they still I feel fat. So there’s this shift in thinking. Where does it start to become delusional and how can we prevent it? We’re lacking insight here, which is what bugs me. On a final note, Verena Haas also works on AN patients’ increased drive to move. So there’s also a physical component, physical suffering, that I don’t think many people know about.

Thank you for these important insights – a call to all of us, maybe, to heed the complexity of both the illness and the research into it.

Zooming out a little: when looking at your research profiles and the CVs of all three of you, one cannot help but notice how truly global your journeys have been. In what ways have your research stays abroad shaped your careers, given your research impetus, and maybe even shaped you as persons?

Le Grange: When I first left South Africa in 1986 to go to London, I didn’t realize that I landed at the right place at the right time. I wanted to be in London because Gerald Russell was really the father of research into eating disorders in the modern English-speaking world, coming a hundred years after AN was first described. So I wanted to go and work there, but I didn’t realize how much that would begin to open the door for a career that has really taken me everywhere I’ve always wanted to go. I’ve been meeting wonderful colleagues in my work. I hope to impart a little bit of the wisdom I’ve accrued along the way as I learned a great deal from whether it is in Berlin at the Charité or the Royal Children’s Hospital in Melbourne. Because people come with different questions and different perspectives and it keeps you humble, keeps you on your toes. That’s a quality that I love to nurture, and also to never take myself too seriously and laugh at myself.

Haas: My answer is very brief. If I hadn’t done my PhD in Sydney, which was on a completely different topic, we wouldn’t be sitting here talking today. I learned about FBT almost on the side then. When I was in Sydney, I was focusing on basic science, metabolism, hormones and all that in eating disorders, and I just thought, why are the kids in hospital for three or four or five weeks only? I’d learned it differently in Germany, where hospitalization usually lasts about four months. Traveling to and working in another country is really the reason why we’re here today. Which leads me to think: Take away any of the three of us, and this undertaking wouldn’t work.

Correll: Yeah, I totally agree – though I do want to stress how much of the credit should go to you, Verena Haas. And yes, traveling expands our minds. Going outside of your system enables you to look at the system with other eyes, realizing there’s more than one way to go about things. You’re constantly learning and being enriched. I only wanted to go to the U.S. for four years and now it’s been 25. I lived there full-time for 20 years. I thought I’d do some research and come back. It’s been so enriching, personally and academically.

February 2023 / Dr. Nina Schmidt

*The pilot was funded, in part, by BILD hilft e.V. „Ein Herz für Kinder“ (project numbers PÄ-39691 and MED-49388).