In its first national survey of US adults, the Pulmonary Fibrosis Foundation has found “alarmingly low” awareness of PF and its symptoms.

To help combat late-stage diagnoses, the Pulmonary Fibrosis Foundation recently commissioned its first national survey of PF awareness among US citizens.* The survey aimed to determine the extent of disease awareness and behavioral response to symptoms.

What They Did

Between January 9 and January 10 of 2020, a total of 2,013 US adults completed a series of online questions administered by the independent market research firm Atomik Research. The survey had a small margin of error (+/- 2%) and a high level of confidence.

What They Found

Despite 50,000 new cases diagnosed each year, the survey revealed an “alarmingly low” level of PF awareness, particularly regarding disease symptoms.

Grouped into four categories, overall findings were as follows:

  1. Awareness.  While most Americans (82%) acknowledged the seriousness of PF, just 14% were aware of disease symptoms. Those most unaware of the disease were aged 60 and older and so most at risk (only 1% said they were “very familiar” with the disease). Only 9% knew of PF’s symptoms, while just 2% had spoken to their doctor about the disease. Overall, just 4% of people were “very familiar” with PF, with men more aware than women (5% versus 2%), and people in the US South most familiar with the disease.

  2. Behavior.  On the other hand, most Americans (80%) said that if they were experiencing breathlessness for more than a month they would visit a doctor. Nearly the same amount of respondents (78% or almost four in five people) said they would seek medical attention for a persistent cough and fatigue, with half indicating they would wait less than three weeks to see a doctor.
  3. Finding a Cure. Though about half of Americans (49%) believed it was “very important” to find a cure for PF, just 27% were optimistic a cure would be discovered in their lifetime.
  4. Current and Former Smokers. Current and former smokers were nearly 10% more likely to be aware of PF symptoms than non-smokers, and had a 10% greater chance of having PF or knowing someone with the disease. Further, compared to just 3% of non-smokers, about 10% of current and former smokers had been spoken to about PF by their doctor. Finally, PF wasn’t perceived as the most serious lung disease by either current and former smokers or non-smokers, with the first group regarding COPD as the most serious illness and the second group cystic fibrosis.

In a press release, PFF president and CEO William Schmidt said:

“Awareness of PF and its symptoms remains very low, and for many, the first time they hear of it is when they are diagnosed. Improving understanding of this disease can help drive earlier diagnoses and encourage support for needed research, so that we can ultimately find a cure for PF.”

Read the full survey report for more information.

*Pulmonary Fibrosis Foundation. National Awareness Survey 2020.