The importance of patient-reported outcomes and measures

John Conway was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2015. “In the initial stages, you conceive of the disease in kind of an abstract way, because you can still do pretty much everything that you did before”, he told The Lancet Respiratory Medicine. “It is only when you have an exacerbation, and you lose something physically and you cannot fully recover, that you really recognise what a progressive, chronic condition is all about. The effects on your mental health become a central part of your experience, though this is not usually mentioned in your early consultations.”