Interstitial or diffuse lung disorders (ILDs) comprise over three hundred diseases. They are the rare birds among the lung diseases, with approximately 20 000 patients in the Netherlands. The correct diagnosis is often missed. “The trick is to ask the right questions in order to get the right answers,” says Professor Marjolein Drent, pulmonologist at the St. Antonius Hospital in the Dutch town of Nieuwegein.
I regard my work as a great challenge
says Marjolein Drent. “It can be very difficult to find the potential triggers of interstitial lung disorders (ILDs). Most people don’t realise that certain substances could influence the disease process, or could even have caused it. Think of cat litter (containing silica). Moreover, there’s often not just one factor involved, but a combination of factors, such as genetic predisposition, environmental conditions and exposure. That makes it difficult to establish the correct diagnosis. So it’s very important to take enough time and be creative in the kind of questions you ask to get an idea of a patient’s everyday activities.”
When Marjolein Drent was appointed as professor in 2005, she was asked what kind of a welcoming gift she would like. She remembers: “In view of the relative lack of familiarity with ILDs, among both patients and care providers, I decided to start the ild care foundation (deliberately non-capitalised, Ed.). My idea was that if there was a foundation, people could donate money, so we’d have some funding to promote awareness of ILDs.” The foundation has been awarded official charity status (ANBI) and obtained recognition from the Dutch Central Bureau on Fundraising (CBF) in 2016. “Our aim is to put ILD on the map and to give the patients an identity,” explains Marjolein Drent. “We produce educational materials and collaborate with several patient societies and relevant professional associations. The foundation organises information evenings, symposia and master classes for care providers, including nurses, physiotherapists, assistants and doctors, and we have also sponsored PhD projects. We have a large network, with short communication lines.” One of the ways the foundation enhances awareness of ILDs is by stimulating and supporting research. “For instance, we have invested a lot of effort in researching complaints that used not to be taken seriously, such as fatigue among sarcoidosis patients." That has a major impact on the patient’s life, and is hard to treat with medication. The foundation has sponsored a PhD project which showed that physical exercise can improve the patients’ fitness. Based on these findings, they have now started a follow-up study, entitled “Continuous monitoring with the ild care activities monitoring app.”
“Traditionally, a patient’s physical condition has always been assessed at check-up visits to the hospital,” explains Marjolein Drent. “We often have very little information about what happens in between these check-ups. In 2016 we suddenly got a lucky break: the specialist quality assurance company SYSQA and software developers Mansystems were willing to help the ild care foundation’s research team develop an app enabling continuous monitoring. The ‘ild care activities monitoring app’ was then created very rapidly”. “Greater understanding begins with gathering information,” says Marjolein Drent. “So we give the patients a wristband that records their physical activity and calories consumption. They also use their mobile to answer questions about how they feel. The app collects the data and establishes logical connections between them, after which they can be consulted by both doctors and patients.” When entering the study, a patient sets a goal that they wish to attain within the next three months. “This goal, and the data collected by the app, enable the researchers to develop a targeted training programme. As the app provides valuable information about the patients’ activities, physical condition and fitness, they gradually develop greater insights into the way they function. This enables them to adapt their activities to their abilities. That is perhaps the greatest advantage for the patients themselves.” The research project has meanwhile been completed and the data are being interpreted to draw up recommendations.(An impression of an information meeting in the context of the study is available at https://vimeo.com/225475968)
Marjolein Drent thinks it is very important that patients are consulted and have a say in their treatment programme. “They can provide us with first-hand information,” she says. “If you inform patients thoroughly and involve them in developing a care plan, they will be more motivated and have fewer doubts. In the end, that will increase their confidence and satisfaction with the outcome.” Further information is available at www.ildcare.nl.
Professor Marjolein Drent was trained as a pulmonologist at St. Antonius Hospital in Nieuwegein. This is also where she did her PhD project, supervised by Prof. Jules van den Bosch. She then worked at Maastricht University Medical Centre (MUMC) and the Gelderse Vallei Hospital (ZGV) in Ede. In 2015 she returned to St. Antonius Hospital to join the ILD Centre of Expertise. She also works for the Pharmacology and Toxicology Department of the Faculty of Health, Medicine and Life Sciences (FHML) of Maastricht University (UM).
Michelle Scherpenborg, copywriter/editor