Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis
President of EU-IPFF Steve Jones and Jean-Michel Fourrier, Secretary, EU-IPFF Board were co-authors of the article about an online survey conducted among members of European patient organisations, with a self-reported diagnosis of pulmonary fibrosis. They were invited to participate in the survey, which assessed the diagnostic pathway retrospectively, focusing on four stages: (1) time from initial symptoms to first appointment in primary care; (2) time to hospital referral; (3) time to first hospital appointment; (4) time to final diagnosis. It comprised open-ended and closed questions focusing on time to diagnosis, factors contributing to delays, diagnostic tests, patient emotions, and information provision.
The survey shows that the time to diagnose pulmonary fibrosis varies widely across Europe and that delays occur at each stage of the diagnostic pathway. Raising awareness about pulmonary fibrosis amongst the general population and healthcare workers is essential to shorten the time to diagnosis. Furthermore, there remains a need to provide patients with sufficient information and support at all stages of their diagnostic journey.