Vast Majority of Americans Are Unfamiliar With PF Symptoms, PF Foundation Survey Finds

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by Mary Chapman |

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Although 50,000 new cases of pulmonary fibrosis (PF) are diagnosed each year, a national survey found that 86 percent of U.S. residents are unfamiliar with the disease’s symptoms.

The online National Awareness Survey from the Pulmonary Fibrosis Foundation (PFF), was completed by 2,013 U.S. adults, and conducted January 9-10 by the independent market research agency Atomik Research.

More than 200,000 Americans have PF, a progressive disease marked by the scarring of lung tissues. The two most common symptoms of the disease are a persistent dry, hacking cough and shortness of breath.

Another symptom is hypoxemia, a drop in blood-oxygen levels that causes fatigue and aching muscles and joints. People with PF may also have clubbed fingers and toes, and a poor appetite that leads to pronounced weight loss.

People over the age of 60 and those with a history of smoking are considered most at risk of developing PF.

“Awareness of PF and its symptoms remains very low, and for many, the first time they hear of it is when they are diagnosed,” William Schmidt, PFF president and CEO, said in a press release. “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.”

Some 90 percent of people who filled out the 18-question survey reported that their physicians had never talked to them about PF. Among respondents age 60 and older — the population most at risk of developing the disease — 91 percent did not know PF symptoms, and 96 percent had never spoken with a physician about PF.

Despite an overall lack of symptom awareness, 82 percent of survey participants said they considered PF a serious disease.

The survey found that 80 percent of respondents would see a physician if they experienced shortness of breath for more than a month. Seventy-eight percent said they would do so if fatigue and cough lingered. A lasting cough and fatigue would prompt half of those surveyed to seek medical attention in less than three weeks.

Current or former smokers were 10 percent more likely than those who haven’t smoked to know the symptoms of PF. The same percentage of that population was also more likely to either have PF or know someone affected by the disease. Almost 10 percent of the current/former smoker group reported discussing PF with a physician, compared with 3 percent of those who never smoked.

Among those with a history of smoking, 37 percent are more likely to consider chronic obstructive pulmonary disease the most serious respiratory illness, while 27 percent of those without a history of smoking consider cystic fibrosis the most serious lung disease.

“Because many symptoms of PF are similar to those of other illnesses, like the common cold, it can be difficult to diagnose and treat, leading to late-stage diagnoses,” Schmidt said. “Our national survey results show a clear need to increase understanding of PF, so patients are better able to recognize the early signs of the disease and start conversations with their physicians.”

Forty-nine percent of the respondents said finding a PF cure is very important, although 61 percent were unsure whether that will happen in their lifetimes.

“This national survey and the PFF’s awareness efforts are critical to ensuring that Americans understand PF, its symptoms and risk factors, and engaging people nationwide in fighting this serious lung disease,” Schmidt said.