Many Wait a Year or Longer for PF Diagnosis, Survey Finds

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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For more than 40% of people with pulmonary fibrosis (PF), obtaining an accurate diagnosis takes a year or longer, according to a European survey.

As noted by the international team of researchers who conducted the study, survey findings highlighted “a major need for more information and support during and after the diagnostic process.”

Data from the study was reported in the study, “Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey,” in the journal Frontiers in Medicine.

A timely diagnosis of PF is important because it allows treatment to be started sooner. However, many people with PF experience diagnostic delays, which are tied to worse overall outcomes.

“Therefore, it is important to get better insights into patients’ experiences during the diagnostic journey to identify reasons for potential delays,” the researchers wrote. “Understanding patients’ experiences will also help healthcare workers guide and support patients during their diagnosis journey.”

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Working along with patient organizations, researchers conducted a multinational survey of PF patients in an effort to better understand their journey to diagnosis.

The survey was completed by 273 patients across 13 countries in Europe. Most of them were diagnosed in Spain (21.6%), followed by Belgium (20.1%), the U.K. (18.3%), Italy (17.2%), and Germany (10.6%). Most survey respondents had idiopathic pulmonary fibrosis (IPF) (78.4%), followed by sarcoidosis (10.3%), and other types of PF (11.4%).

“The total time from initial symptom onset to a final diagnosis of pulmonary fibrosis, varied greatly amongst patients,” the researchers wrote.

Nearly a third of patients were diagnosed within three months of noticing symptoms. Such an early diagnosis was more frequent for patients with IPF (31.3%), than for those with sarcoidosis (14.3%) or other types of PF (19.4%).

By contrast, 40.2% of patients waited a year or longer to be diagnosed. Fewer patients with IPF than with other types of PF experienced such long diagnostic delays (36.4% vs. 58.1%).

By looking in more detail at the different steps in the diagnostic process, researchers noted several phases where avoidable delays tended to occur. For example, nearly a third of respondents reported waiting more than six months from the time they first noticed symptoms to when they first discussed them with their doctor.

“This highlights the need to raise awareness of pulmonary fibrosis amongst the general public, so that individuals seek medical assistance earlier,” the researchers wrote.

Also of note, for nearly a quarter of patients, it took longer than three months from the time they were referred to a pulmonologist to the time they were actually seen in a hospital. The team said that such delays “may reflect waiting times or patients postponing a hospital clinic appointment,” but noted there is no published research on why delays occur at this stage in the diagnostic journey.

Although more than half (62.6%) of the patients received their final diagnosis within three months following their first hospital appointment, for nearly a quarter (21.6%) it took up to one year, and for 13.2% more than a year.

Survey respondents also answered questions related to the emotional experience of going through a PF diagnosis.

Many patients expressed a desire for more education and support during the entire diagnostic process. Nearly a quarter (23.6%) felt they received insufficient information, and more than one in 10 (13.6%) said they did not know why certain diagnostic tests had been performed.

“The patients stated that they would have benefitted from more information during the diagnostic process, not only after the diagnosis was established. They would have welcomed more information before, at and after diagnosis,” the team wrote.

Respondents also expressed a desire for more information about living with PF day-to-day. Researchers stressed that clinicians should engage patients in these conversations.

Also of note, many respondents reported a desire for access to a psychologist or peer support groups. Only 6% of survey respondents said they were informed about support groups when they were diagnosed, even though such support groups were well-regarded by the patients.

“Patients’ experiences highlight the need for understandable information concerning the diagnostic tests performed, differential diagnosis, final diagnosis, and treatments as well as peer support groups,” the investigators wrote.

“Improving several aspects of the diagnostic pathway for pulmonary fibrosis is therefore warranted to minimise delays and improve patient satisfaction throughout Europe,” they concluded.