Pulmonary Fibrosis Patients Face Practical and Emotional Challenges, Survey Shows

Pulmonary Fibrosis Patients Face Practical and Emotional Challenges, Survey Shows

Pulmonary fibrosis patients experience significant practical and emotional problems from their disease, according to a nine-country Boehringer Ingelheim survey.

More than 150 people took part in the survey, which exposed the worries that idiopathic pulmonary fibrosis patients have about their disease’s irreversible progression.

Sixty-one percent of patients said they were either worried or extremely worried about the possibility of having an acute IPF exacerbation. A severe exacerbation can decrease lung capacity, significantly increasing the risk of death.

The survey also showed that patients are worried about the impact of the physical limitations the disease imposes on them. Patients emphasized that it was important to know the length of time they can stay physically active and continue to pursue their interests and hobbies. They also said it was important for them to accept and learn to live with the disease.

Feelings of fear, anxiety, uncertainty and hopelessness were among the emotions they reported.

“As IPF patients, we know our lungs will deteriorate and it will be hard to breathe, but we don’t know when that is going to happen,” Stephen Jones, an IPF patient from the United Kingdom, said in a press release. “This can create a lot of worry and anxiety. It is important that we make the very best of the wide range of available support from healthcare professionals and patient groups, as well as close family and friends.”

IPF patients need a range of support. In addition to drugs, it includes pulmonary rehabilitation programs, guidance on diet, and a personalized exercise plan. A crucial piece of support is a supply of oxygen for times when a patient has difficulty breathing.

Part of the healthcare support patients want is their physicians talking with them about their concerns and challenges.

But patients should also make use of a wide range of healthcare professionals who understand the disease. This team can include physiotherapists, rehabilitation staff, nurses, social workers, psychologists, family members and support groups.

“A strong support network is vital for patients with IPF to help address the full impact of the disease,” said Marianne Seiter, a nurse specializing in lung diseases at Thoraxklinik, Universitätsklinikum in Heidelberg, Germany. “Nurses, and other members of the multi-disciplinary team, can help patients take a pro-active approach to managing their condition through a range of care options. With appropriate support we can work together to help patients maintain the best quality of life possible.”

Boehringer Ingelheim manufactures Ofev (nintedanib), an approved treatment of IPF. The company conducted the survey to identify challenges that patients face, so it could help them with those challenges.

“We know a lot about the physiological changes that occur in IPF but surveys like this help us to better understand the psychological burden,” said Dr. Marlies Wijsenbeek, a pulmonologist at Erasmus Medical Center in Rotterdam, the Netherlands. “While medical care is available to help slow the progression of IPF right after diagnosis, it is also crucial that patients are given emotional support from the earliest stage possible to help minimize anxiety associated with the disease.

“In daily practice we need to continuously remind ourselves that we are not just treating lungs, we are treating people,” he concluded.



  1. Carolynn Fishleigh says:

    I have been diagnosed with IPF since 2014. My last tests described me as “moderate”. I have oxygen at level 4 for “on exertion”. The uncertainty of what, when and how this disease will further manifest is the worst part. I have been on Ofev for 6 months. I will be 74 this September and last month at my check up, I was offered a lung transplant but only if I would make an appointment and start anti rejection drugs immediately. I was advised to move to Toronto in order to be close to the hospital for all the appointments and for help in case I had problems tolerating the anti rejection drugs. I think they wanted to give me the transplant right away because after my birthday, I would no longer qualify, because of my age. I appreciated being offered what is really the only hope for this disease, but I decided not to make the appointments for the following reasons: 1. My husband is age 83, in reasonable health and enjoying life as it is right now and a move to Toronto would basically end life for him because he hates Toronto. We have a big support system here, 2 hours from Toronto, but nothing there. 2.My daughter has health problems of her own and has just started a new job which is a new lease on life for her and to start worrying about what I would be going through, would probably end life as she knows it right now and if both my husband and daughter decided not to give up their lives in order to be there for me, leaving me to go it alone, the guilt would wreck whatever peace of mind they have left, probably forever. 3. The specialist explained all the problems that could happen and at the end of it all said that the transplant would likely only last from 2 to 5 years. 4. I think I might make it that length of time anyways and life on my own terms, not as a lung transplant patient. I can handle the stress of knowing I am going to die of this disease, much easier than the uncertainty of what the whole process of getting a lung transplant would do to me and those I love. I am not afraid of dying. I am afraid of not living life to the fullest which means acceptance and faith in an afterlife, which I am sure of.

    • John C. Pierson, Sr. says:

      Your comment rings true. I was diagnosed two years ago, including an open lung biopsy. I have been mulling over the pluses and minuses of undergoing a transplant while awaiting the results of the battery of tests just completed at the Cleveland Clinic. Thank you and God bless you.

      John C. (Jack) Pierson
      Akron, Ohio

  2. Katherine Broach says:

    I am female, 79, in my 4th year of IPF and blessed to remain on the well spectrum. I have even outlived the cough. I have been alone for forty years and perfectly happy; alone — and never lonely. Until very recently. I haven’t a clue where this came from. Some years back, I moved away from years of supportive friendships to be by family ‘in case of emergency.’ We continue those friendships with email. There is more to daily living than the rare emergency. IF IT IS TO BE, IT’S UP TO ME to design a life worth living in case the loneliness does not leave as quickly as it came. Are the lingering threats of IPF and now heart disease responsible for the very sudden feelings of loneliness after all these years? I am an only child with a hobby I love. My golden years have been my best! Until now. Please don’t suggest I volunteer; i cannot walk any distance and it takes everything i have to get a couple of meals together, to get myself to dr. appointments, groomed, etc. I have three children and 10 living grandchildren, some close by — all very busy and otherwise occupied. We are in touch, some more than others. Is it time for assisted living and the company of others? I want to think life is worth living while I am still on the well spectrum of IPF. For awhile I thought the worst thing that could happen besides being in pain and short winded was having to switch to decaf for heart. All the years alone, never once occurred to me I’d be lonely. Ever. 2017 has been a rough year w/skin cancer requiring radiation. A-fib followed radiation and a world/whirl of unwelcomed changes.

    • Tim Bossie says:

      We are very sorry to hear that you are now struggling Katherine. It is a horrible disease that can hit so hard even after years of living with it with relatively few problems. We do hope that things begin to get a little better concerning your other health problems and support. Assisted living may be an option, but only if you are comfortable with it.

      • Katherine Broach says:

        Thanks, Tim. I plan to at least look into it. I have a heart procedure this week that the doctor says he thinks will make me feel better than i have for a long time. A little energy would be a good thing. A little air, too. Less fatigue and sleepiness, God willing. You are kind to reach out. I needed that! I know our end stage IPF cohorts would change places w/me in a NY minute. Bless them. I’m no oblivious to their plight.

  3. Judi says:

    Hello, I’m 67 years and diagnosed with ILD approx 15 months ago. To say I was shocked is an understatement. I was already struggling with Hashimoto’s Thyroiditis, Sjogrens Syndrome and Lupus and also recently diagnosed osteoporosis in the spine.
    I feel quite alone at times even though I have a loving family and friends because no one seems to understand why I am constantly fatigued and in pain. I have joined online support groups hoping to find understanding there but there is no group for someone who has it all. Some days I wonder if it would be easier to not be here. I know deep down that this is my personal struggle but sometimes I feel very lonely. Thanks for allowing me to share. Judi

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