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Perspective interview - Ania Muntau (Communicating after a diagnosis)

Perspective interview - Ania Muntau (Communicating after a diagnosis)

PKU Academy Newsletter: Fourth Issue Feature interview with Prof Ania Muntau

Ania Muntau Talks About Communicating With Patients After a Diagnosis

Prof Ania Muntau heads the departments of Inborn Errors of Metabolism (IEM) and of Molecular Pediatrics at the Dr von Hauner Children's Hospital, Ludwig-Maximilians-University, Munich (Germany).

For many in PKU research and treatment there is a divide between the work that goes on with the whole patient and the work ‘within’ the patient, to better understand the disease at the molecular level. The European Phenylketonuria Group (EPG) Symposium in Rome (23–24 March 2012), as an event, provided opportunities for expertise to be shared at both ends of this scale. Prof Muntau works across the entire spectrum, from patients to basic research. When we spoke to her at the EPG Symposium, we were keen to find out what this broad range of interest gives a clinician and a researcher.

Prof Muntau has been looking after children with IEM since she qualified as a doctor, but she met her first PKU patients while still a student.

‘During my final years of medical school, while studying and working in hospital, I spent some of that time in pediatrics’ she told us. ‘There I got to know my first two newborn PKU patients. I met one of these patients last week and she is now a beautiful young lady of 23, who works as a pediatric nurse.’

These PKU infants clearly made an impression on the young Ania Muntau, but how important, we asked, are the first impressions the doctor makes on the parents of a PKU child at the point of diagnosis.

First impressions count

‘Communicating the diagnosis is a crucial point in the long-term treatment of PKU patients’ Prof Muntau said. ‘Every metabolic pediatrician needs to appreciate that the moment of diagnosis delivery has an enormous impact on the life of the parents but also on the life of the child affected with PKU. This is because the way the diagnosis is communicated, the setting in which the diagnosis is communicated, the key words that are used, will make the difference between a positive or a negative attitude of the parents towards the disease, the way they deal with it and the way they talk to the child about it. This impacts on the quality of treatment for this patient.

‘I really would like people to think about these points before they go into such a conversation.’

Dr Muntau said that the work Prof Feillet presented at the symposium on communicating diagnoses was really the first solid data they had. ‘And it is important that we continue to share best practice and systematically review what is working and what is not. We know from interviews with patients that, even 30 years after diagnosis, they will recall the time and date of the meeting, what the doctor was wearing and perhaps four or five points: it is not to be healed, lifelong treatment, heavy burden, neurologic symptoms…

‘But there is a lack of training for metabolic pediatricians in communication skills and, in particular, concerning delivery of the first diagnosis. The workshops at the EPG Symposium are the first instance where we have really addressed this topic and I am very happy that we got the chance to do so.

‘With my own students, in their last year, I run a training program called “Breaking Bad News” where we use role play so the students can explore how it feels to give the diagnosis and try to understand better what it might feel like to receive it. We record these sessions on video so that we can then review and discuss them. Activities like this, integrated into training, are an important step forward where, in the past, workers in the field have all had to teach themselves.’

But metabolic pediatricians aren’t the only doctors who have to break bad news. Is there something to be learnt from other specialties, we asked.

Dr Muntau: ‘I think that in other areas the situation is a bit better, for example in oncology. This is where I see that they work much more on this. This has to do with the nature of the diagnosis but also has to do with money. Every oncology department has several psychologists and they have the funds to organize specific training.’

Battling against obscurity

Was the relative obscurity of IEM when compared with, say, childhood leukemia a challenge, we asked the professor. ‘Certainly’ she replied. ‘Everyone knows what leukemia is, but awareness of IEM is lacking in society and this leads to a lack of support. In Germany, we say that the patients with IEM have no “lobby”.

‘It is difficult to raise funds, and when you try to contact politicians and the media they often have difficulty appreciating the importance of the conditions and the work needed to treat them. These conditions are considered rare but in total, when seen together, PKU and the other “rare” IEM caused by missense mutations, affect 1 person in every 500 of the EU population.’

Look again at the unusual

We suggested that, despite the challenges that metabolic pediatricians face, this is surely an exciting time to be working in this field?

Dr Muntau declared ‘When I started work in this field 22 years ago, my boss said “Don’t think about research in PKU because everything is known, there is nothing to do anymore.” Yet now, after 60 years of dietary treatment, we have identified a new mechanism of treatment.

‘If I had a room of already qualified metabolic pediatricians and I had to give them a single “take-home” message, I would remind them that they should look very closely at things that do not appear logical, to watch for things that don’t fit together. When we see these things we tend to put it away “It’s strange; it’s a bit different from that which I expected.”

‘But these are the things that, if you investigate and you go in depth, may result in the discovery of something new. Remember, this is how the potential of BH4 as a treatment was discovered in the first place.’

Ania Muntau

Inborn Errors of Metabolism (IEM) and of Molecular Pediatrics
Dr von Hauner Children's Hospital
Munich, Germany