The original idea of building-up patient journeys for various rare lung diseases came up as a result of the collaboration between EURORDIS (https://www.eurordis.org/) and ERN-Lung (https://ern-lung.eu/). We have not developed such a material previously and thought that the strategic and analytical approach this initiative provides is beneficial for the whole PH patient community.
The patient journey nicely demonstrates the – sometimes difficult – stages the PH patients are facing following the identification of their very first symptoms.
The main objective of this infographic was to provide a comprehensive summary of each steps, ie. what are the symptoms, how the disease is diagnosed, what type of treatments and medications are available and what to expect from the follow-ups?
The patient journey at the same time, however, sheds light on the – often unmet – needs of the patients and outline the ideal situations. By doing this, it may also serve as an excellent advocacy tool for discussion with other stakeholders. It may help in the identification of the obstacles and hurdles in each stage – providing solutions how to overcome them.
The patient journey was developed in collaboration with our PH expert colleagues. Special thanks go to Prof. Marion Delcroix, Prof. Marc Humbert and Prof. Olivier Sitbon for their valuable input.
The patient journey is endorsed by the European Lung Foundation (https://www.europeanlung.org/en/) and ERN-Lung.
The leaflet is currently available in English, but will be translated to many languages to reach as many patients and local stakeholders as possible.