See your GP when you have symptoms of Pulmonary Fibrosis
From the onset of symptoms to diagnosis of pulmonary fibrosis, the patient journey involves delays at each stage of the diagnostic pathway.
This is the conclusion of the study Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey, published in August 2021 by a large group of European doctors and researchers as well as the Action for Pulmonary Fibrosis, UK represented by EU-IPFF President Steve Jones.
The survey shows that the time to diagnosis of pulmonary fibrosis varies widely across Europe. Delays occur at each stage of the diagnostic pathway, and it is essential to shorten the time to diagnosis.
The survey involved two hundred and seventy three participants from 13 countries, and it shows that there is a particular need to raise awareness of pulmonary fibrosis in the general population and among healthcare workers.
The numbers show that for forty percent of the respondents it took more than 1 year to receive a final diagnosis. Only 50.2% of the respondents made an appointment with their GP within 3 months of onset of symptoms, and 73.3% of the respondents were referred to a hospital within three visits to primary care, 9.9% had to visit primary care six or more times before referral. These delays through the diagnostic pathway are avoidable and have to be minimised.
The survey also points out that there is a major need for more information and support to patients and carers during and after the diagnostic process.
They need understandable information concerning the diagnostic tests performed, differential diagnosis, final diagnosis, and treatments as well as peer support groups.
To recognise the symptoms of Pulmonary Fibrosis please watch this video, produced by our Greek member of EU-IPFF.