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Doctors understand patients’ IPF concerns


A new survey of over 400 pulmonologists from 10 countries found that 88% of pulmonologists believe a delay in the diagnosis of idiopathic pulmonary fibrosis negatively impacts patients.

A new survey of more than 400 pulmonologists from 10 countries found that 88% of pulmonologists believe a delay in the diagnosis of idiopathic pulmonary fibrosis (IPF) negatively impacts patients.

In addition, 79% of pulmonologists stated that delayed diagnosis will delay initiating treatment that slows disease progression, according to the survey conducted by Kantar Health and funded by Boehringer Ingelheim.

Diagnosis of IPF is challenging, requiring a series of specific diagnostic tests with the median time from first symptoms to diagnosis between 1 and 2 years. Initial misdiagnosis occurs in around half of patients, because symptoms are similar to other respiratory diseases such as chronic obstructive pulmonary disease (COPD), asthma and congestive heart failure.

However, more than 80% of patients with IPF have a distinctive, Velcro-like crackling sound that can be detected through a stethoscope.

Related:New study highlights benefits of nintedanib in IPF treatment

The survey showed that slowing disease progression is considered the biggest benefit of initiating treatment when IPF is first diagnosed (81%) and pulmonologists’ primary reason for selecting a pharmaceutical treatment for IPF (78%).

Improving patient quality of life was the second highest motivation for pulmonologists when selecting an IPF treatment (63%).

In addition to asking pulmonologists about their approaches to treatment, the survey asked participants to consider IPF from the patient’s perspective, including impact of the disease. When asked what was most important for an IPF patient to understand in terms of knowing how IPF will affect them, 77% of pulmonologists stated, “knowing what treatment options are available for IPF," and 68% said “knowing that IPF is unpredictable and that their condition could change suddenly and unexpectedly.”

Kauschka“As someone who talks every day to people with IPF, it is fascinating to see how pulmonologists view and prioritize the impact of the disease on patients and make treatment decisions,” said Dagmar Kauschka, chairperson of the German patient advocacy group Lungenfibrose e.V. “We put a lot of time and energy into supporting IPF patients over their day-to-day concerns such as breathlessness and the risk of exacerbations. We are reassured to see through this survey that pulmonologists do recognize the key concerns when thinking about the impact of IPF on their patients.”

Top of mind for physicians when thinking about the impact of IPF were breathlessness (54%), lung function (21%) and exacerbations (13%). Exacerbations – events of acute respiratory worsening – are a risk to all IPF patients and they can occur at any time during the course of the disease without warning or known cause. Acute exacerbations can impact the course of the disease, often leading to death within a few months, making them a crucial treatment consideration for pulmonologists managing IPF patients.

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