There are various actions patients with pulmonary fibrosis can take to manage their symptoms and help them live their life to the fullest. While pharmacological treatments are an important tool there are many things that patients can do to manage their health. In this episode of Spotlight on Pulmonary Fibrosis, we are joined by pulmonologist Dr. Ralf Harun Zwick from Austria, and Matea Perkovic, a patient advocate from Croatia. Listen as they discuss why it’s important to develop a holistic treatment plan that suits the need of the individual patient. They also talk about the role of pulmonary rehabilitation programmes in helping patients to manage their condition and improve their quality of life.
Welcome to Spotlight on Pulmonary Fibrosis, a podcast provided by Boehringer Ingelheim. This podcast series aims to help people navigate their way through the complex pulmonary fibrosis journey, leading doctors and patient organization representatives from across Europe share their insights on the topics of diagnosis, treatment, and management of pulmonary fibrosis.
Welcome to this episode of spotlight on pulmonary fibrosis. In this episode, we are going to be talking about rehabilitation and non-medical treatment. Here with us today are Matea Perkovic, a patient advocate from Croatia. Hi, Matea!
Hi. Hello, and thank you for having me.
And Dr. Ralf Harun Zwick, he's an expert pulmonologist from Austria with extensive experience on pulmonary rehabilitation. Thank you for joining us, Dr. Zwick.
Dr. Zwick (00:56):
Thank you for the invitation.
It's great to have you both with us today. I'm gonna start with you Mattea. Now, could you please just basically tell us your story. Why did you choose to become a volunteer and a patient advocate? And why is it so important to you?
Well, I'm a physical therapist and I primarily enter this profession because I wanted to help people on a daily basis. And I realized that increasing the quality of someone's life can really change the life of not only the patient, but his entire social environment. For example, if you reduce someone's pain, you will automatically affect their business and social and family life. So, and I became a volunteer quite accident because I'm in a physical therapy where I'm in a, in contact with people who have scleroderma. And I became a patient advocate gradually because I had a desire to act kind of globally and positively impact a larger group of people with this condition. And I, I just couldn't refuse any project that would give a stronger voice to creation patients in Europe and the world. My wish is to show the patients in Croatia that it's extremely important to participate in clinical research and following projects because by doing so, I think valuable knowledge is gained and personally volunteering and my career as a physical therapist has really made my life fulfilling because I have met so many people with so many different stories and destinies that I have a feeling like every one of them has changed my life, and my perspective for the better, and I'm just grateful to be a part of something so important.
My next question is to you, Dr. Zwick as a specialist physician, could you please just tell us a bit about yourself and your background, how it all began and why you wanted to specialize in pulmonology and also how it is to work so closely with patients with pulmonary fibrosis?
Dr. Zwick (2:59):
To be honest, it was a long and winding road I went through. I started in Innsbruck in Tirol, in a cardiology department where I spent five years. Then I came to Vienna, spent five years in a pulmonary unit, did intensive care and other things, and the interaction between the heart and the lung was very interesting for me. And this is also very interesting in special lung diseases like in interstitial lung diseases. This is not only a problem of the lung, but it is also a problem of the heart, and these interactions were always interesting for me from the physiological point of view. And then there was a promising new thing around 20 years ago in pulmonary patients. And this was a rehab program and especially outpatient pulmonary rehabilitation was not possible in Austria, and so 12, 13 years ago, we were the first who started an outpatient pulmonary rehabilitation program in Vienna, Austria.
Yes, that's wonderful, and while there are treatments available to manage symptoms and slow progression of the disease, pharmacological treatments alone won't always be sufficient to manage the physical and emotional challenges the patients may encounter during their journey with pulmonary fibrosis. In this episode, we're going to be discussing how rehabilitation programs as well as non-medical treatments can help patients to manage their pulmonary fibrosis and also improve their quality of life. Dr. Zwick, Why is it so important to develop a holistic treatment plan for patients with pulmonary fibrosis that not only includes pharmacological treatments and school medicine, but also rehabilitation and non-medical treatments?
Dr. Zwick (04:48):
When I treated patients with chronic diseases independent, if this was a chronic, uh, lung disease or a chronic heart disease, I recognized that the effects of medical therapy are limited and especially in chronic lung disease in patients with COPD in patients with IPF, those medications are very limited. The effects in contrast of pulmonary rehabilitation, especially in these chronic lung patients are very high. So it is very effective to do a holistic program with nonpharmacological interventions in these patients. That's why I started it.
So of course, the symbiosis of school medicine, as well as holistic treatments are extremely important for the patients. Patients with pulmonary fibrosis and other lung conditions might be recommended by their physician to participate in pulmonary rehabilitation programs, or the patient might have come across some information when searching about their diagnosis, naturally patients and their families often have a lot of questions. So Matea, could you please tell us what are the common questions that patients and their families have about pulmonary rehabilitation programs?
Well, yes, most of them are already familiar with their conditions. So when they come to us, most common things they ask is where they can find good specialists and who they can talk to or what else they can do to improve their conditions, for example, what I exercises to do or what kind of food is good for them or which food to avoid, and things like that.
Matea, I believe that you have a few important questions from a patient's point of view for Dr. Zwick
So what is a pulmonary rehabilitation program?
Dr. Zwick (06:34):
Imagine that you have a fitness center and this fitness center is especially designed for you. There is not Arnold Schwarzenegger sitting in there, but there is you, and there are lots of specialists around, people you can ask about your problems, people who can help you immediately, when you have a problem. That is how a pulmonary rehabilitation program looks like.
And could you tell me what types of different health care professionals are involved in the pulmonary rehabilitation?
Dr. Zwick (07:02):
I want to describe you the way a patient, uh, goes in our rehabilitation program. First you see the secretary, she's a professional in answering all the questions you have on the structure daily structure and all other things. Next thing is you see the doctor, he or she is a specialist in terms of understanding your problems, how to help you with medication and other treatments. Then you see the physiotherapist, she's a specialist in understanding the physiology of your breathing problems. Then you see a exercise therapist, he's a specialist in training your muscles. Then you see an agri-therapist, she's a specialist in understanding functional problems. Then you see a nutritionist she's a specialist in understanding your problems concerning nutritions. Next step is seeing a psychologist she's in charge of understanding and helping you with anxiety, fear, and other problems. Then you might see a nurse or a social worker if you have other problems. So there is a broad range of people involved in this program.
Thank you. And, uh, can you tell me what types of activities makes up a pulmonary rehabilitation program?
Dr. Zwick (08:23):
The core of everything we do is training therapy and the main parts are endurance training first and strength training second. Then we have nutritional interactions, we have bronchial exercise with indoor things we do, we have outdoor things we do, we have psychological interventions and we have structured education of patients. The patient has to understand everything about his disease, to understand why these problems are. Then we give him solutions in these educational programs, how to deal with shortness of breath, if he's, or she's a smoker. We do a, a smoking cessation program. If there is a psychological problem we interfere there. So again, there is a broad range of activities and interventions we do in this holistic program.
That's, really interesting. And, uh, what, uh, are the benefits for the patient by participating in such a program?
Dr. Zwick (09:35):
The evidence now 2022 is clear. There has been a dozens of, of publications and they show following benefits. First, dyspnea gets better. The second thing is that exercise capacity improves and this has impact on your everyday life. You can go to get your things done. You can clean up your kitchen. So, the activities of daily living are easier. Next thing is that there is evidence that anxiety and depression, which is prevalent in all these patients, is reduced. We can improve the body composition and all this together improves your quality of life.
Thank you. And I was just wondering also, where is the pulmonary rehabilitation administered? Is it administered at home or in the hospital or somewhere else?
Dr. Zwick (10:30):
In Austria we have two possibilities for pulmonary rehabilitation. We have excellent inpatient pulmonary rehabilitation, this was introduced decades ago, where it started to put patients with pulmonary diseases in urban settings, where there is good air into an inpatient program. New is that we have, and we were the ones who started first, outpatient pulmonary rehabilitation in cities, where this makes sense. So people can come to us, Like in a fitness center, train for a couple of hours, get the interventions for a couple of hours, get the education, and then go back home. These are the two possibilities most countries have.
Okay. So those are the things that the patients should be doing in order for them to manage their condition from a rehabilitation point of view, but from whom and where can patients receive help to find a pulmonary rehabilitation program that is right for their condition?
Dr. Zwick (11:33):
The first person who can help you is the doctor. He's a specialist in interstitial lung disease, and he knows how to treat you. So the medication is one part, but the doctor should also know about nonpharmacological intervention. He should guide you through your problems and give you some support in terms of getting you a connection to a physiotherapist, maybe to a nutritionist, maybe to a rehabilitation program. And the second thing you should do is getting in contact with support groups. People are excellently organized, and they can be very helpful. And they know things that the doctor doesn't know.
Speaking of support groups, uh, patient organizations, Matea, you are a patient advocate yourself. How can patient organizations support patients with finding and getting access to pulmonary rehabilitation programs?
Well, we give them information about the best therapists and for example, for respiratory physiotherapists, where they can find them in our country. Also, we try to give them support and tell them that they're not alone in this condition. And sometimes we just connect them to someone who has the same condition, and you can just instantly see that it is easier for them to handle the situation, especially when it's the early stages of the disease, and when they are just struggling to accept the diagnosis.
So pulmonary rehabilitation programs are extremely helpful and very important for patients, but they're not always easy to get access to. Matea, I believe you have a question to Dr. Zwick about access to these rehabilitation programs?
So for patients living in rural areas far away from specialist centers, what can they do if there are no nearby centers offering pulmonary rehabilitation programs? And what is your advice to patients, who are hesitant to participate in pulmonary rehabilitation programs due to long travel distances?
Dr. Zwick (13:45):
In case you live in a rural area and not in a city, there might be the possibility to get the connection to a physiotherapist. A physiotherapist is the best who knows everything about exercise and breathing therapy. Physiotherapists are very important in the hospital setting because their goal is to get you back on your feet again. And that's what the knowledge of physiotherapists is. So the first thing I would do if I would live not in the city, but in the rural areas, I would search the next physiotherapist and there might be one next door. And the second thing is that there are now with the possibilities in the internet, a lot of nice videos, concerning first your disease, then medication that you would need for your disease. Then non-medical interventions such as breathing exercises and other things. So make research and get in contact with other people who have this problem. This would be my solution. If I would not live in a city,
Dr. Zwick, there, you spoke about breathing exercises. And now we have a few questions about that as well. Breathing exercise training is a key part of the rehabilitation program, but what is meant by breathing exercises in particular?
Dr. Zwick (15:15):
If you're talking about breathing exercises, there are three things, uh, that should be understood. First, with breathing exercises., we want you to understand how to deal with dyspnea. The second thing is that we want to strengthen your muscles. We want to strengthen the diaphragm, that you get more air. And the third thing is that we want you to relax.
Can you tell us why breathing exercises are beneficial to patients with lung conditions, such as pulmonary fibrosis?
Dr. Zwick (15:51):
In patients with pulmonary fibrosis there is one very simple thing that you can learn immediately. It is the first lip breathing. You form your lips, like you were whistling. You inhale very relaxed through your nose and you exhale via your mouth with this formation of your lips. And this reduces immediately shortness of breath. It slows down the pace of your breathing. It increases oxygen uptake, and it calms you down.
Great tips there, but how can patients get help to master those breathing exercises that you were just talking about?
Dr. Zwick (16:33):
First, you need a professional. This is the doctor. He will not help you there, but he will maybe get you a, a connection to a specialist who is the physiotherapist. They can show you how you, how to do this. And the second thing is there are excellent videos in the internet. You can find them easily, and they explain you within one or two minutes, how to do this, and then you will immediately feel better.
I have one more question, Dr. Zwick, um, you also mentioned that physical exercise plays a role in the rehabilitation program. However, for patients with pulmonary fibrosis, that experience fatigue and shortness of breath, even during simple day to day activities, it can be difficult to understand how physical exercise could be beneficial for their condition. So could you please explain how physical activity can help patients to breathe and get stronger? And what recommendation can you give to patients, uh, that find it difficult to find physical activities, that work well for them?
Dr. Zwick (17:39):
If we are talking about patients within interstitial lung disease and especially about people with IPF. Twenty or thirty years ago, we used to put people on a cycle and tell them, please try to cycle 20 minutes, 30 minutes. Of course, this is absolutely impossible for a patient with interstitial lung disease. And especially for those with IPF even more, if they, uh, need supplemental oxygen. So things changed over the years. And what we do now is that we do interval training. We use for example, 30 seconds of cycle training, and then we use a rest and this could be 30 seconds or one minute or two minutes, how the patient reacts. So what we do is we subscribe an interval training with 30 seconds of exercise and 30 seconds of rest. And what we want is that people can sustain this for 20 minutes. Then we improve the time slowly to 22 minutes, and then to 30 minutes, and this would be a perfect training modality, and this is how a slow progression of training works in these people. And it is very successful to do it in this way. You could do the same in, in terms of walking, walk a distance, then take a rest, walk a distance, and take a rest and going further you will improve your exercise capacity. Concerning the second part of your questions, recommendations for the patients with physical activity, first and most important thing is that you understand if you need oxygen or not. And if you need oxygen, you need to go to a specialist, to a doctor who is a specialist, a pulmonologist in this field, and he will prescribe you some oxygen, and this will help you a lot. The second thing you need is you need support. Interstitial lung diseases and especially IPF is an overwhelming disease, so you need the support of your family, and you also need the support of support groups.
Thank you, Dr. Zwick, and can you answer me, are there any other complimentary therapies, for example, yoga, mindfulness, music therapy that patients could benefit from and who should patients talk to if they would like to, and before they integrate such activities into their treatment plan?
Dr. Zwick (20:22):
Concerning complementary therapies, I'm very open, to be honest, there is a long tradition in Asia and in India, especially concerning yoga pranayama, and other breathing techniques. I find this very interesting and useful, and the new wave is mindfulness. We also do some research on mindfulness in patients with, uh, chronic lung disease and in patients after COVID infection. And it might be very helpful to do these interventions. There are also very promising data in COPD patients concerning music therapy, singing groups might be helpful, or other things. So I'm very open for complementary therapies. And if you need help, just look into the internet, just get in contact, uh, with other people. And, uh, they might have good tips that, uh, the doctor hasn't. Concerning the second part of your question, the most important thing is to be active, to make research in the internet and to get in connection with physiotherapists who are the specialists of the lung.
So it's essential to do your research properly. And of course, uh, the internet is a wonderful tool for that. Matea, you're a volunteer and a patient advocate. Do you often come across patients who find these complementary non-medical therapies particularly useful for their ability to cope with the condition?
Yes, there are quite a number of people that actually told us and told me personally, that their condition is better since they have been using other therapies, for example, different kind of dietary products or supplements or some kind of herbs. And I believe that moderation is the key and not being extreme in anything is important. I just try to support them because a bet of realizing, uh, which specialist you can trust, and what is the best therapy for you is not an easy bet.
Well, the patients are very lucky to have people as you volunteering and being a patient advocate, getting a diagnosis and living with a chronic disease can make one feel isolated, however, you're not alone. And there are others out there on a similar journey. Dr. Zwick, what role does peer support have for patients when it comes to managing living with pulmonary fibrosis? And how is it integrated into the rehabilitation programs that you're talking about?
Dr. Zwick (22:53):
You understand now that pulmonary rehabilitation is a holistic thing. The big thing is that we have time. We have a lot of time. I take one and a half hour time for the first contact with the patient to understand his problems. And it is an integrated care. We are integrated into hospital, into specialist groups, and there are peer support groups who are also part of this integrated care program. So they are very important and every patient of mine gets an information on the next patient organization near door.
So we've spoken a lot about support and patients not being on their own. Mattea, how can patient organizations help patients and their families to find those good support groups? And can you give us perhaps some examples of community activities organized by the patient organizations?
Well, uh, we are a scleroderma association, so pulmonary fibrosis is a part of scleroderma, and if a patient wants to connect with, uh, association that specializes in pulmonary fibrosis, we give them information who to contact. And we are under an umbrella association called Creation Alliance for Rare Diseases, that we can always ask for further information, or just connect them with our patients. But our primary goal is to raise, awareness and just sending the message to people with this condition that they don't have to go through this alone. And also we do a lot of community activities and provide, information through Facebook, um, TV and radio stations. But of course the COVID change the way of communicating. So most of our activities were online for the past two years. And for example, we organized lectures about the importance of COVID 19 vaccine, and our patients were able to connect through different channels and ask us specialists everything about COVID and the vaccine. And through that we specially focused on the patients who are older and, uh, are not so familiar with the technology. So we focus that even them can participate because it is important to include everyone who is willing to participate.
That's wonderful and extremely important work. Uh, Dr. Zwick perhaps one last question to you, do you have any other recommendations that can help patients to better take care of themselves as they're navigating their way through their journey with pulmonary fibrosis?
Dr. Zwick (25:37):
The first thing is be honest to yourself. It starts with the diagnosis. Everybody's anxious, you might be angry, you might be depressed. So be honest to yourself, be honest to the beloved ones. Don't lie to yourself, don't lie to the other ones you love. The second thing is, search a specialist. Search a doctor who is a specialist in this field. This is a rare disease. Not everybody knows how to treat it in terms of medical interventions and non-medical interventions. And the third advice I would give you is get in contact with a patient group,
Some great advice there to finish up for today. Doctor Zwick, thank you so much for your insights for the extremely interesting information that you've provided us with, and of course, for joining us today,
Dr. Zwick (26:27):
Thank you very much for this very interesting conversation
And Matea thank you to you for taking the time to be with us today and for your very important information about patient associations. All the very best to you.
Thank you so much for having me. It was a pleasure.
In outro (26:51):
Thank you for listening to this episode of the Spotlight on Pulmonary Fibrosis Podcast. For more podcasts in this series, you can subscribe for free on whatever platform you use. The information on this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment.