Only Half of IPF Patients Talk to Doctors About Treatments

Only Half of IPF Patients Talk to Doctors About Treatments

Patients with idiopathic pulmonary fibrosis (IPF) want more information from their doctors at diagnosis, according to the results of a new survey. Researchers said that only half of patients surveyed report discussing antifibrotic treatment decisions with their doctors when they’re diagnosed.

Results of the survey study, titled “Differences in Patient and Physician Viewpoints of the Management of Idiopathic Pulmonary Fibrosis (IPF),” were recently presented at the American Thoracic Society (ATS 2017) International Conference in Washington, D.C.

Researchers designed a 20-minute online survey to assess the viewpoints of IPF patients and physicians who had consulted with more than five IPF patients within three months and prescribed a treatment.

The online survey was completed by 297 people from Europe and Canada between September and October 2016, of whom 43 were patients and 254 were physicians.

Among patient responders, only 56 percent reported receiving enough information at diagnosis. In this group, 58 percent were told that IPF is progressive, 44 percent discussed prognosis, and 49 percent were informed about treatments.

Most patients (93 percent) preferred to receive information about these topics directly from their doctor, but many patients searched for more information about IPF (86 percent), treatment (81 percent) and prognosis (76 percent).

Also, 86 percent of patients valued the ability of IPF treatments to slow disease progression over the associated side effects. Overall, the same percentage of patients felt confident in managing those side effects.

Among watch-and-wait physician (WWP) responders, they were less likely to discuss IPF with their patients compared to doctors with a more proactive approach, even when asked to do so by patients.

In terms of treatment, proactive physicians treated 62 percent of patients with mild IPF (as determined by the physician) with an antifibrotic drug less than four months after diagnosis, compared to watch-and-wait physicians, who provided the same treatment to only 38 percent of patients.

Also, WWP were more concerned about side effects, whereas proactive doctors mostly valued disease progression.

“This analysis identified a disparity between the information patients want at diagnosis and the information they receive from physicians,” researchers wrote.

“Furthermore, survey results suggest that [proactive physicians] may be more confident with the benefit-risk profile of antifibrotic treatment than WWP,” they added. “A belief in effective treatment options may ease the difficult conversation with patients regarding the seriousness of a confirmed IPF diagnosis, thereby enabling patients to make informed treatment decisions.”


  1. Sandy says:

    First, I can’t view the comments.

    Second, most of what I’ve learned about IPF, I’ve found on your web site. I’ve had four different pulmonologists since diagnosed in November 2015, after having searched for years to find out why I was coughing all the time. I finally found Dr. Jose Diaz, who has had me try Esbriet (didn’t work for me), has exercise equipment, breathing tests, and works with my ups and downs on prednisone, which seems the only thing that helps me. It has caused me other problems though not associated with IPF.

  2. Vickey Shepard says:

    I was just diagnosed with pulmonary fibrosis. It was supposedly progressed because of use of an aytialfibrilstion meficine. I have been taking it a year. Now I am suffering with high heart rate and not sure whether to start another medicine that could also aggravate the pulmonary fibrosis. I am confused and scared of options.

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