A recent study has uncovered just how many people with pulmonary fibrosis (PF) do not receive an immediate diagnosis. This study conducted in Europe was published in Frontiers of Medicine. It was completed by an international research team and ultimately concluded that there is a major need to improve diagnosis time.
This European survey found that 40% of all PF patients wait more than a year to receive their diagnosis. Not only does an earlier diagnosis provide clarity and give answers, but it also ensures that necessary treatment happens as soon as possible. The later treatment starts, the worse overall outcomes.
This study aimed to determine what patients currently experience in order to improve patient’s futures.
The survey included a total of 273 patients in 13 European countries. The greatest number of patients were from the following countries.
- Belgium – 20.1%
- Spain – 21.6%
- Italy – 17.2 %
- Germany – 10.6%
- U.K. – 20.1%
78.4% of all of the participants in this survey were diagnosed with idiopathic pulmonary fibrosis (IPF); however, 10.3% had sarcoidosis and 11.4% had some other form of PF.
Here are some of the most notable results.
- 1/3 of patients received a diagnosis within 3 months
- 3% of those with IPF fell in this category
- 3% of those with sarcoidosis fell in this category
- 4% of those with another form of PF fell in this category
- 2% of all participants waited one year or more for a diagnosis. IPF patients were less likely to fall into this category
- 1/3 of patients waited 6 months after noticing symptoms to talk to their doctor
- ¼ of patients had to wait 3 months from the time they got a pulmonologist referral to the time they were seen
- 6% of patients received their diagnosis within 3 months after first being seen in the hospital
- 6% of patients didn’t get their diagnosis for one year
- 2% didn’t get their diagnosis for over one year
This survey also aimed to uncover how patients feel as they go through this diagnosis journey.
Most patients felt that they needed more education and more support during their diagnosis journey.
- 6% didn’t feel as though they received enough information
- 6% were not informed why some tests were being done
- Most patients desired more information about how to cope with their diagnosis on an everyday basis
- Most reported wanting to have access to a peer support group or a psychologist
- Merely 6% were informed of such groups
Ultimately, this study has shown that not only is diagnosis needed sooner for this patient population, but that more education for patients is needed, and more attention must be given to their needs prior, during, and after diagnosis.
You can read more about this study here.