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 3-5 years 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, health care around idiopathic pulmonary fibrosis patients is often “disease-centered” and relies on clinical surrogate outcomes that are poorly related to patients’ quality of life and disease experience. Therefore, patients with idiopathic pulmonary fibrosis have several unmet needs in all domains of health that they wish to see recognized and addressed in the context of the treatment of their disease and its complications. In this review, we summarize the care pathway from the patients’ perspective, identifying current gaps in care, education, support, and communication among patients with IPF, their caregivers, and care teams during the patient journey. The role of patient-reported outcomes (PROs), PRO measures (PROMs), and patient-reported experience measures (PREMs) in their care is discussed, as well as the need of disease-specific PROs, PROMs, and PREMs.