Delayed IPF diagnosis negatively impacts patients by delaying treatment according to global survey of pulmonologists¹

Ingelheim, October 8, 2015 - 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 (IPF) negatively impacts patients. 79% stated that delayed diagnosis will delay initiating treatment that slows disease progression.¹

IPF is a progressive and life threatening lung disease.² Diagnosis of IPF is challenging, requiring a series of specific diagnostic tests with the median time from first symptoms to diagnosis between one and two years.^2,3,4 Initial misdiagnosis occurs in around half of patients because symptoms are similar to other respiratory diseases like chronic obstructive pulmonary disease (COPD), asthma and congestive heart failure.⁴ However over 80% of patients with IPF have a distinctive, Velcro-like crackling sound that can be detected through a stethoscope.⁵

The survey showed that slowing disease progression is considered the biggest benefit of initiating treatment when IPF is first diagnosed (81%) and pulmonologist’s 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%).¹

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’.

Top of mind for physicians when thinking about the impact of IPF were breathlessness (54%), lung function (21%) and exacerbations (13%).¹ As IPF progresses lung function gradually and irreversibly declines leading to difficulty breathing and decreased oxygen supply to the major body organs.⁶ 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.⁷ 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.⁸

“As someone who talks every day to people with IPF, it is fascinating to see how pulmonologists view and prioritise 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. One of our goals is to fight for patient support as a regular part of therapy. We are reassured to see through this survey that pulmonologists do recognise the key concerns when thinking about the impact of IPF on their patients.”

Notes to Editor

About the survey
The global research was conducted by Kantar Health. The fieldwork was conducted online, during August 2015. 10 countries participated in the survey, namely: France, Italy, Germany, Spain, UK, Poland, Sweden, Brazil, Canada, Japan. A total of 416 pulmonologists were surveyed. The survey was funded by Boehringer Ingelheim.

About idiopathic pulmonary fibrosis
IPF is a progressive and life threatening lung disease.2 IPF affects as many as 14–43 people per 100,000 worldwide.^9,10 IPF is characterised by progressive scarring of lung tissue and loss of lung function over time.^6,11 Development of scarred tissue is called fibrosis. Over time, as the tissue thickens and stiffens with scarring, the lungs lose their ability to take in and transfer oxygen into the bloodstream and vital organs do not get enough oxygen.⁶ As a result, individuals with IPF experience shortness of breath, a non-productive cough and often have difficulty participating in everyday physical activities.¹² Acute IPF exacerbations are defined as rapid deteriorations of symptoms within days or weeks. These events can occur at any point in the course of the disease, even at first presentation.⁷ All patients with IPF are at risk of acute IPF exacerbations.⁷

To practice identifying various respiratory conditions, including IPF, the IPF Sound Challenge app can be downloaded for free on iTunes or Google Play Store.

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