Physical Activity Decrease in IPF Suggests Current Measures Underestimate Disease Impact

Physical Activity Decrease in IPF Suggests Current Measures Underestimate Disease Impact

Physical activity predicts mortality in idiopathic pulmonary fibrosis (IPF) as well as established measures, according to a study that suggests that traditional measures, nevertheless, might underestimate the impact of disease progression on patients’ everyday lives.

Researchers at the German Center for Lung Research in Germany found that physical activity declined far more than forced vital capacity (FVC) among patients who survived a three-year follow-up period.

Also, patients classified as having stable disease according to FVC had a significant decrease in physical activity, which also did not reflect exercise capacity measures, according to the study, “Prognosis and longitudinal changes of physical activity in idiopathic pulmonary fibrosis.”

“Our present study depicts an astonishing discrepancy between 6MWD [six-minute walk distance, an exercise capacity measure] and physical activity when studied longitudinally in patients with IPF,” researchers wrote in the article, published in the journal BMC Pulmonary Medicine.

“This discrepancy suggests that physical activity and exercise capacity reflect different aspects of the functional status of IPF patients when the disease progresses,” they added.

The research team followed 46 patients for three years. Their physical activity levels were assessed using accelerometers over a period of one week at study start, and then again at the three-year follow-up among survivors.

After three years, 57 percent of patients were still alive. Those who had died had decreased lung function, exercise capacity, and physical activity at the start of the study compared to the patients who survived. They also used antifibrotic treatment less often.

While several parameters were linked with the prognosis, the number of steps per day and percent predicted FVC most accurately predicted mortality, also when taking the initial differences between patients into account.

Follow-up measurements showed that lung function and physical activity had become significantly worse over the three-year period, while exercise capacity as measured by the 6MWD test showed a smaller decline.

But physical activity declined much more than both lung function and exercise capacity, and after three years, the average number of steps per day was similar among survivors and those who died from what researchers observed at the study’s start.

Declines in physical activity were similar in patients with stable lung function compared to those who had progressive disease measured by lung function declines. This would suggest that physical activity might reflect a feature of disease progression not adequately captured by traditional measures.

While researchers admitted the study had several limitations, they suggest that more studies are needed to understand the aspects of disease progression reflected by physical activity. Such studies, they said, are also needed to determine if current measures underestimate the impact of worsening disease on a patient’s everyday life.


  1. Bonnie Miller says:

    I also find it difficult to tell people about my IPF. Many people will still say, “I hope you feel better soon” not grasping that this is a disease that does not get better. I did have one positive response. A woman told me her sister has IPF and takes the same medication I do. She said her sister has been stable on it for a couple of years.

    • Sandy Mueller says:


      I have IPF and not on medication specifically for IPF. What medication are you and your sister taking? I think maybe I should be doing something. This disease is tough to deal with. I would be interested in an online support group. Do you know of any?

      Sandy Mueller

    • marlene williams says:

      my daughter seems I should walk and walk and walk. I can do about 15 or so steps and am then, exhausted. Even from folding clothes.
      Does one must have the dry cough for this IPF? I can sit for hours and not ever want to move. Everything is a chore for me……..just let me sit, ha ha ha.

  2. Ron Cade says:

    Today is the last of my Pulmonary rehab program. My energy is still lacking although improved. Walking through the house seems effortless compared to outside. Walking across the grass or up and down the sidewalk takes a lot more effort.?? The amount of oxygen I need is a 6. Those on oxygen therapy will recognize the term. A guy in my class has been dealing with IPF for seven years. Another guy reports that to be nine years. He is waiting for double lung replacement as of recent. I must ask, how valid is the 2 to 5 year thing? I met 4 people in my support group who have had lung replacement. I’d have never known if not told. Im too old for that im thinking.
    They are not on oxygen therapy. I’m wondering if I can recover muscle tone? I want to be active but the drive isn’t there. I’m working on it. Cheers!

  3. katherine broach says:

    I have the same question as Shirley above. I read and re read this article. It is clear as mud. whatever energy i have in a day is needed for the basics: grooming, meal prep, errands, grocery shopping, driving to and from a doctor’s appointment, and nothing happens w/o great effort. As for telling people we have a disease that is terminal, more often than not your candor is rewarded by being reminded we are all terminal. If it isn’t happening to whomever you are addressing, it isn’t happening at all. For the time you spent thinking how to present your news, you might best have saved your breath altogether. In sharing it with a lifelong friend of mine, she told me how I might choose to hasten my demise, by refusing nourishment as her mother in law did. “You have a choice,” she said. So much for grief. She repeated, “you have a choice” as if she might have been too subtle first time around.

  4. Colleen Puniard says:

    I think the psychological effects on IPF sufferers is overlooked. When it comes to exercise I find it very difficult to motivate myself. Doing pulmonary rehab has helped and I’m more active than previously but there are many times when I just feel it is all too much.

  5. Bonnie Miller says:

    To respond to earlier question — I was taking OFEV until I recently transitioned to Esbriet with less severe side effects.
    I also engage in a pulmonary rehab exercise program twice a week and really enjoy it. I am not on oxygen so far and can still play 18 holes of golf with a cart as long as I pace myself. I was diagnosed about a year ago and had a lung biopsy at Mayo clinic. I feel good so far, but have begun the travel bucket list with s trip last month around Lake Superior in a rented motorhome.
    My advice…get up and move, make yourself do things you used to think you would do “someday.”

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