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‘The care and research of ILD is really a joined effort’

Pulmonologist dr. Marlies Wijsenbeek
Reading time: 3 min

Pulmonologist dr. Marlies Wijsenbeek works in one of the three Interstitial Lung Disease Expertise Centers in the Netherlands. It's her conviction that intensive scientific research can advance care and produce medicines that will give ILD patients a longer and more dignified life. To achieve this goal, collaboration in care and research of ILD is of the essence. Wijsenbeek: ‘You can only achieve things through teamwork.'

These centers also have more than average experience with ILD

Video conference

Wijsenbeek works in the Erasmus University Medical Center, where a lot of medical specialists are collaborating in the ILD Expertise Centre. 'We've got pulmonologists, specialized nurses and other specialists like pathologists, radiologists and immunologists', says Wijsenbeek. 'We treat a lot of patients, most of which are referred to us.' The three Dutch ILD Expertise Centers on their part collaborate with treatment centers all around the Netherlands. 'These centers also have more than average experience with ILD', says Wijsenbeek. 'We communicate with these centers by video conference. We have around eight of these conferences each week and together with the specialists in the treatment centers we strive to ascertain the diagnosis and formulate the treatment plan for the patient. That way, the patient doesn't have to travel between hospitals. A patient should only be referred to an expertise centre when it's necessary.' During the video conference the doctors of the different centers simultaneously look at things like CT-scans, blood work and biopsies. 'We then give advice', says Wijsenbeek. 'Whether the patient needs to come to the expertise centre, for example when we think he might be a candidate for transplantation or for further diagnostic work-up, or whether the patient can be treated in the local treatment centre.'

Teamwork

Apart from collaboration on a national level, Wijsenbeek points to the fact that there is more and more collaboration on a European level. At the end of 2016, the European Commission has approved of 23 European Reference Networks for rare diseases, one of these is the network for rare-lung diseases, which includes ILD's . Currently, 24 officially acknowledged ILD expert centre are part of the European reference network for ILD. The philosophy behind the European collaboration is that every European deserves an equivalent treatment of his disease. 'There are big differences in the treatment of ILD in Europe', says Wijsenbeek. 'We've summarized this for idiopathic pulmonary fibrosis (IPF) and presented these differences to the European Parliament. In some countries things like oxygen treatment and palliative care are arranged better than in other countries. We think every patient in Europe is entitled to the same standard of care.' Besides making sure every patient gets an equal treatment, European collaboration is also needed to further research. 'The care and research of ILD is really a joined effort, you have to collaborate to get results. Not just in your own treatment centre, but also nationwide and across borders, with the rest of Europe. With such rare diseases you can only achieve things with team work.'

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ILD is a very dynamic field in which a lot of research is happening

Misunderstood

A rare disease does not only mean that doctors need to collaborate closely to get results, it also means that patients sometimes feel isolated in their illness. 'I recently had a patient with IPF who was deteriorating rapidly' says Wijsenbeek. 'This patient told me he wished he had cancer, because then his friends and family would have had an idea of what he was going through.' Wijsenbeek and her colleagues conducted a survey among around 120 of their patients, which indicated that a lot of them felt misunderstood by their environment. 'Nobody knows what lung fibrosis is', says Wijsenbeek. 'This is a big problem. On the other hand you also have to realise that there are a lot of rare diseases and the resources to create awareness around all of them are limited.'

Making a difference

Like most doctors, Wijsenbeek has a big passion for helping patients and conducting research. 'ILD is a very dynamic field in which a lot of research is happening. This is necessary, because ILD patients often have a poor prognosis. Luckily, there has been a lot of progress in knowledge and treatment options in the last ten to fifteen years. The more we learn about underlying mechanisms of ILD, the bigger our changes are for creating medicines for treating a wide variety of ILD's. I also think we need to develop more tools for creating a dignified and valuable life for ILD patients. It's something I'm very passionate about and it's also one of the great things of being a doctor: just by making a difference for one patient, you do something significant.'


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