What patients with Idiopathic Pulmonary Fibrosis and caregivers want – Filling the currents gaps with patient reported outcomes and experience measures

Idiopathic pulmonary fibrosis is a progressive disease, with a high mortality within the first 3–5years from diagnosis and a poor quality of life mainly because of the burden of symptoms, such as dyspnea and cough, occurring usually many months before the diagnosis. Although available antifibrotic therapies slow down disease progression, they have no impact on quality of life. Moreover, healthcare around idiopathic pulmonary fibrosis patients is very often “disease-centered”, and relies on clinical surrogate outcomes that are poorly related to patients’ quality of life and disease experience.