Expertisecentrum Interstitiële Longziekten (St. Antonius Ziekenhuis)

The St. Antonius Hospital is a nationally and internationally recognized center of Excellence for interstitial lung disease (ILD). ILD is a collective name for a group of rare, debilitating and threatening disorders that occur in the vesicles and the space between them (the interstitium). The best known ILD are sarcoidosis and lung fibrosis. Due to both the rarity of the disorders, the large number of different diagnoses and associated treatment processes, and the absence of “simple” diagnostic determinations, expertise is required to determine the correct diagnosis and the most optimal treatment. The center has the vision that a continuous and consistent treatment and follow-up policy can, according to the latest scientific insights and collaborating disciplines, achieve a better life expectancy and also a better quality of life for people with a rare lung disease. On the one hand, the concentration of tertiary patient care is essential for optimal and sustainable care at the highest level, meaningful research and effective training courses and knowledge transfer. On the other hand, spreading care throughout the country is important to maintain and develop high-quality knowledge and high-quality ILD care in the region. The center relies on 3 pillars: excellent patient care, training of care professionals and scientific research. To guarantee availability of top specialist care in the future, we train new specialized pulmonologists and lung nurses. Furthermore, an infrastructure of biobank and registration has been set up to facilitate evaluation of care and availability of samples from rare diseases. Scientific research in the field of diagnosis and treatment are ongoing with an extensive network of scientific collaborators is in place. In addition, we highly value cooperation with patient associations and knowledge transfer to patients and their families. We are convinced that this will strengthen the patient's position in healthcare, e.g. in situations of shared decision making. At the same time, collaboration with patients provides valuable feedback on our care and research program. Our top specialist position has developed into a coherent whole where care, research and training constantly reinforce each other. The application reflects the essence of the center of excellence. In a period of five decades, we developed a large range of different and very specific medical diagnostics, treatment approaches and care for a large group of patients with very rare debilitating and life-threatening lung diseases. In our view, this specialist care is only possible on the basis of multidisciplinary expertise, whereby all medical specialists involved regularly share and discuss patient information in order to jointly decide on optimal diagnosis and treatment and where clinical practice issues are converted into scientific research. Furthermore, attention should be given to the patient’s psychological well-being and enough time should be reserved at the clinic for contact with the patient. Nationally, fellow pulmonologists from other hospitals increasingly refer complex patients to our tertiary center. However, the patient also needs care in his own region. Healthcare providers also need regular, easily accessible, high-quality contact with an expert. Therefore, the center provides top specialist ILD care and the transfer of knowledge through structured multidisciplinary video conferencing with other hospitals. As a result, some of the ILD patients can also be remotely diagnosed and / or treated in their own hospital and the knowledge and skills of local practitioners are also increased and new insights are quickly spread nationwide. It is the ambition of the St. Antonius Hospital to continue this top specialist position for ILD coupled with research and education & training and to have developed a sustainably integrated interdisciplinary care unit for tertiary ILD care in 5 years. This allows the center to continue to play a leading and distinctive role nationally and internationally. Our center is based on 3 pillars, care, research and education. For all these top specialist care activities, there is no structural funding available in the current Dutch healthcare system and this causes a significant budget deficit. The objective of the application is to fulfill the responsibility as a recognized center of excellence to provide good quality care and to contribute to the further development and dissemination of knowledge and expertise.