Chronic obstructive pulmonary disease (COPD) is a common illness, affecting nearly one in 10 adults around the world over the age of 40. As disabling as COPD is to the body, it can also have a substantial emotional impact on those affected. Listen in as Dr. Mo Alsuwaidan discusses the link between mental health and COPD with special guests Dr. Marc Miravitlles and patient advocate Alfons Vinuela, offering their insights from both a medical perspective and lived experience.
Chronic obstructive pulmonary disease (COPD) is a common illness, affecting nearly one in 10 adults around the world over the age of 40. As disabling as COPD is to the body, it can also have a substantial emotional impact on those affected. Listen in as Dr. Mo Alsuwaidan discusses the link between mental health and COPD with special guests Dr. Marc Miravitlles and patient advocate Alfons Vinuela, offering their insights from both a medical perspective and lived experience. Learn more by tuning in at listenwellpodcast.com or watch the full episode here.
Disclaimer: This podcast is provided for educational purposes and is not intended to replace discussions with your healthcare provider. All decisions regarding your care must be made with a healthcare professional, considering the unique characteristics of your personal situation. The opinions expressed are the opinions of the individuals recorded and not the opinions of Viatris. Individuals featured in this podcast may have participated in the past as or may be current members of an advisory group for Viatris.
Mo Alsuwaidan (00:00):
Welcome back to Listen Well, I'm Dr. Mo Alsuwaidan. In today's episode, we'll be talking about a very disabling illness that affects millions of people worldwide, chronic obstructive pulmonary disease, or COPD. We'll also talk about its links to emotional health and issues such as depression.
Mo Alsuwaidan (00:33):
I'm joined by two special guests who know a lot about this disorder, both from a research medical perspective but also from a lived experience. Dr. Marc Miravitlles is from Vall d'Hebron University Hospital and Research Institute, where he's a senior pulmonologist, a consultant, and a researcher who's published a lot about this disorder, both from the perspective of the lungs, but also from the perspective of depression.
Mo Alsuwaidan (01:00):
And Mr. Alfons Vinuela is a patient with a lived experience with COPD and alpha-1 antitrypsin deficiency. He works as an NLP, consultant, a writer, and now as a patient advocate. I really hope you're excited to join me for this episode, I think we'll all learn a lot. So, I invite you to sit back, relax, and listen.
Mo Alsuwaidan (01:27):
Welcome to both of you, thank you so much for joining us. Dr. Marc, I'd like to start with you. What is COPD? How do people experience it?
Marc Miravitlles (01:39):
Yes. COPD is chronic obstructive pulmonary disease. This is a respiratory disease, a chronic disease basically caused by smoking, not only, but basically caused by a smoking and the patient suffering from this disease, they usually have shortness of breath, progressive shortness of breath, cough, sputum production, and frequent chest infections, particularly during winters. It affects their quality of life, and we can somewhat control it with medications, but it's usually progressive.
Mo Alsuwaidan (02:08):
Is it very common? Do a lot of people have it worldwide?
Marc Miravitlles (02:11):
It is, it is. It's considered to be the fifth cause of death worldwide, and there are approximately 3 million people suffering from COPD around the world. And in some countries, such as in my country, in Spain, it affects 10% of individuals older than 40 years. So, it's really a health care problem.
Mo Alsuwaidan (02:32):
So, you mentioned older than 40 years, does it tend to be an illness that starts at that age, or can it start younger?
Marc Miravitlles (02:38):
It can start younger, but usually the patients suffering from COPD start having symptoms around the fourth decade of life. And they used to go to the doctors when they're around in the early 50s and when the disease has already progressed. So, we used to see people around 50, 60 years of age when they first consult for the disease. But as you mentioned, the disease used to start earlier.
Mo Alsuwaidan (03:08):
And is it disabling in addition to being a leading cause of death?
Marc Miravitlles (03:11):
It is, it is, seriously. I mean, the patients initially may still continue with their daily lives, but when the disease progresses, they progressively have difficulties in having the usual activities, the daily activities they work, even the social relations.
Marc Miravitlles (03:29):
And they tend to be more at home, not able to go out to do exercise and to have even social relationships. And if we don't stop it, we don't stop the progression, eventually this can be also the cause of death for some of these patients.
Mo Alsuwaidan (03:48):
Alfons, let me turn to you. Can you tell me a little bit about your experience with COPD? When did it start? How were you diagnosed and what was the journey like for you?
Alfons Vinuela (04:00):
Yes. I was diagnosed with COPD in 2000, I was 44-years-old. And later I was diagnosed with having ATT, alpha-1 antitrypsin deficit, and with this deficit, and because I smoke, so my COPD gets worse quickly. Before being diagnosed, and for 50 more years, I was an active professional as a trainer and consultant. But year by year, I found myself more limited.
Alfons Vinuela (04:38):
Then I had to leave my professional activity because it was very difficult for me to travel to get the plane, to get the train and give my classes or conference presently. So, I have to abandon my profession.
Mo Alsuwaidan (04:58):
It sounds like it affected you a lot. What's it like on a day-to-day basis? The symptoms you have or just doing your daily activities? What is that like for you?
Alfons Vinuela (05:08):
Well, I have the symptoms Dr. Miravitlles said before. I have a cough, I have respiratory problems, I was very tired, and I have infections. Well, it affects my life very deeply because I have to quit all the things I used to do. Exercise, I was a skier, I like to ride bike. I like to run, I like to walk on the mountain because I work in a ski resort in the Pyrenees, but I have to quit all these things because my difficult to breathe properly.
Mo Alsuwaidan (05:51):
Dr. Marc, Alfons mentioned alpha-1 antitrypsin deficiency, what is that?
Marc Miravitlles (05:57):
This is a genetic disease. In fact, this disease produces the lack of a protein. So, the liver is not able to produce this protein, and this protein protects the lungs from different … for example, tobacco smoking, pollution, infections. So, normal individual without the deficiency is somewhat protected. Not completely, but somewhat protected.
Marc Miravitlles (06:20):
But an individual with a deficiency is unprotected completely. And therefore, particularly if he or she smokes, then the lung can be progressively destroyed and suffers a COPD that usually can be even a bit more severe than for smokers without the deficiency.
Mo Alsuwaidan (06:39):
And how would someone know whether they have the deficiency or not?
Marc Miravitlles (06:42):
Well, it has to be suspected. It has to be suspected by the healthcare providers and there is a very simple test. A simple blood test measuring the alpha-1 antitrypsin in the blood that can give you a diagnosis. But again, it has to be suspected. And since the clinical manifestations of the disease are similar or almost the same as in a COPD without the deficiency, some of these cases still undiagnosed.
Mo Alsuwaidan (07:10):
I'd like to talk to both of you about the emotional aspects of COPD. I mean, I can imagine that for someone living with a condition like this that's changing their life feels disabling and also affecting them from morning to evening is going to have some effect on their emotions.
Mo Alsuwaidan (07:31):
Let me start with you, Dr. Marc, what sort of things have you seen with your patients in terms of specific mental health conditions? And is there research around that with this patient group?
Marc Miravitlles (07:42):
Yes, there is. I mean since this is a chronic disease of adults, it is also surrounded by a series of comorbidities. And among these comorbidities, depression and anxiety are amongst the most frequent in fact. Unfortunately, they are very unrecognized in many cases because these patients are attended by pulmonologists.
Marc Miravitlles (08:07):
Some of them, although most of them are not really trained in this type of diseases or disorders, mental disorders and sometimes these patients do not receive adequate treatment for these conditions.
Marc Miravitlles (08:21)
But we have conducted some studies or maybe theological studies suggesting that more than 50% of our patients with COPD have some kind of depression. And this is very important because it also limits their quality of life.
Mo Alsuwaidan (08:37):
Because COPD is one of the most disabling illnesses, but also in my field, in psychiatry mental health, we know that depression is a very disabling illness. So, I would imagine if someone has both, they feel even more disabled, and I would imagine it affects their treatment. Do you see that with your patients in the clinic?
Marc Miravitlles (08:56):
Yes. We see some patients that do not adhere to treatment. The patients that have negative thoughts about their health, they don't do exercise, they stay at home, they don't want to socialize, they don't want to go out and these only goes against their evolution of their disease. Because we know that in COPD in particular, as an example, physical exercise is very important. And going out and walking and having relationships, that's very important for their health.
Marc Miravitlles (09:29)
And also, to adhere to treatment, have a positive attitude for the treatment, and also be strong enough to quit smoking those who are still smoking. And for all of this, they need this mental state that allows them, gives them the tools to really confront this situation. And frequently this is not the case.
Mo Alsuwaidan (09:51):
Alfons, can you tell us about your experience, your emotional journey with this illness? You mentioned earlier about your lifestyle and your job changing, but in terms of your emotions, how has that been in your journey of treatment?
Alfons Vinuela (10:08
):
Well, at the beginning, it was difficult to accept the seriousness of COPD. I felt not so bad, but when I start having physical problems or performance problems, I start to worry. The more I learn about the disease, the more distress I become, especially with the mortality statistics, all the figures and the average lifespan of the patients.
Alfons Vinuela (10:40):
I was making numbers about how many years I thought I had left, and it was all negative. That's the thing we have not to do. Because if you get into internet and you see all the figures and you are not a doctor, you cannot interpretate properly all these figures or all these dates.
Alfons Vinuela (10:59):
But fortunately, over the years, my habits and thoughts have changed. Now, I make a routine, as Dr. Miravitlles said before, I do exercise with small weight, with a stationary bike and I walk in the afternoon. Well, in Barcelona, sometimes it's very difficult because the conditions of the weather and pollution, it affects a lot to the people with pulmonary diseases.
Alfons Vinuela (11:30):
And I can still do some traveling and do all this routine with needing supplemental oxygen. At the moment, I don't need oxygen as a supplement. But the change is mentally, I am not complaining anymore. I feel very fortunate to be able to access that and a good doctor, to access a good treatment and the medicines I need.
Mo Alsuwaidan (11:54):
So, you mentioned some things that affected your emotions negatively, going into this downward spiral of negative statistics and some things that helped you, like your activities. What I'm impressed about is also you've been helping a lot of people as an advocate. So, can you tell us about that, advocating for patients?
Alfons Vinuela (12:14):
Yes. I belong to a free pulmonary association, COPD, Spain Association, and another two foundations and associations who takes care about the patients and I collaborate, and this collaboration helped me a lot emotionally. Because being useful to other people as an active patient as I am, it motivates me.
Alfons Vinuela (12:45):
The patients of the associations in which I collaborate are mostly very worried and have a very negative view of their illness. So, I can help them telling them, “Well, if you do exercise as we do, if you have a social environment, a positive social environment, and you have a positive thinkings, it will be better for you.” And that's why we help in these associations to a new people who get the association.
Mo Alsuwaidan (13:22):
You know, I've done many episodes of this podcast and have been honored to talk to many patients and patient advocates. And your answer that you said that it gives you a sense of meaning is a common answer I hear, because it really helps someone's emotions to feel useful, but also to take the learnings they have and then to give it to the next person.
Arkady Koulton (13:44):
My name is Arkady Koulton, and I'm a medical doctor trained in internal medicine and over 25 years, I'm working in pharmaceutical industry. At Viatris, I am leading global medical affairs in respiratory therapeutic area.
Arkady Koulton (14:02)
Viatris has a long history, more than 15 years on working diligently to battle respiratory diseases such as chronic obstructive pulmonary disease, COPD, cystic fibrosis, and asthma, with a current focus on COPD and cystic fibrosis.
Arkady Koulton (14:21):
Viatris currently extensively involved in supporting medical communities to fight chronic obstructive pulmonary disease, providing approved medications and medical education. Based on the modern patient centricity principles, we’re at Viatris working closely with the patient advocacy groups. Globally, in a ways of continuing medical education, patients advocacy boards, patient councils on the clinical trials design and outcomes.
Arkady Koulton (14:53):
For example, at the recent European Cystic Fibrosis Patient Advisory Board, with the 10 cystic fibrosis patients representing five European countries led by the patient advisory board chair, the patients had shared their personal life journeys, discussed the best disease management solutions and recommendations to medical communities for updating the cystic fibrosis treatment guidelines.
Arkady Koulton (15:23):
The plan two hours virtual advisory board has extended to three hours as the patients were excited to help each other and was not enough time to cover all burning topics. And the outcomes of this advisory board were published as a letter to the editor in the Prestige Journal. We found that the patient centrical advisory board are extremely valuable to better understand the disease state, as well as working on the disease management.
Arkady Koulton (15:54)
With Viatris extensive list of generics and brand medications in respiratory therapeutic area who are able to provide help to people worldwide and Viatris empowers people to live healthy at every stage of life via access, leadership and the partnership. Thank you.
Mo Alsuwaidan (16:14):
Dr. Marc, what advice do you have to a patient that has COPD and has depression? What should they be doing?
Marc Miravitlles (16:22):
Yes. First, they have to recognize it. Very often, patients with COPD and depression, they are not aware of that. And they think that their state is normal, is how they should feel. And they don't realize that they're suffering from this depression. And they need to actually ask themselves and realize that they need to have a positive aptitude. If this positive attitude doesn't exist, they need to ask for help.
Marc Miravitlles (16:50):
Obviously, I mean, most of my colleagues and myself, we have not adequate training in these health problems, in psychiatric problems, so we need to collaborate, we need to have a multidisciplinary approach. And this is not unique for COPD, this is for most chronic diseases. And that they usually accumulate, unfortunately, as patients get older.
Marc Miravitlles (17:15):
And therefore, we need to have a multidisciplinary team with other specialists. For example, physical trainers, we need also nutritionists, and we also need psychiatrists. And we need them to help us to address these conditions in our patients. So, first the pulmonologist usually need to recognize that, and then to ask for some help with other specialists.
Mo Alsuwaidan (17:40):
Do you think it would help to have screening tools at the initial contact level or maybe during clinics?
Marc Miravitlles (17:46):
Yes. Yes, that's true. I mean, there are some questionnaires, some short questionnaires that help us to identify patients who may be suffering from depression and maybe candidates for some specific treatment. And in fact, I can tell you an anecdote. I mean, one of the most widely used questionnaire, quality of life questionnaires in COPD, the CAT score, the COPD assessment test is very easy, very short.
Marc Miravitlles (18:13)
But we have demonstrated in a study that one third of the variability in the scores is due to depression, not to the lungs. So, we need to recognize that COPD is a disease that is not only the lungs. So, we need to see the patient in a moralistic way and understand the problems of the patient. And also, again, to work in collaboration with other specialists.
Mo Alsuwaidan (18:35):
So, it's mind and body.
Marc Miravitlles (18:37):
Correct.
Mo Alsuwaidan (18:38):
Mr. Alfons, let me turn back to you with what we just talked about. Have you noticed any difficulties in accessing care when it comes to emotional health depression, are there barriers in the system?
Alfons Vinuela (18:55):
Yes, I think so. The main barrier, as the Dr. Miravitlles said, is the no acceptance and the self-perception of being a sick person in the eyes of the others. And I believe that patients, the patients I know, and from myself these patients depressed by their COPD needs psychological support, and the pneumologist can be empathic and help us with advice beyond the medication and other treatments, multidisciplinary treatments of course.
Alfons Vinuela (19:40):
And this has been my case with Dr. Miravitlles but when there are depressed patients with anxiety and negative mentality, psychological case, absolutely necessary. That's why we think we need the pneumologist and the psychiatrist as well.
Mo Alsuwaidan (20:01):
Working together.
Mo Alsuwaidan (20:01):
Working together, yes, in the same focus. We have the focus as a patient, of course.
Mo Alsuwaidan (20:08):
So, Alfons, I can imagine as a psychiatrist, but also as just a person, the feeling of not being able to breathe can cause anxiety or panic, does that happen for you or other patients you know?
Alfons Vinuela (20:21):
Yes, it happens to me. It is a very bad feeling when you don't have air enough to breathe properly. So, sometimes you are walking by the street, and you have problems to breathe and you getting panic, and it costs a lot to breathe in, to breathe out. So, you have to wait, you have to keep calm and inspire and do exercises.
Alfons Vinuela (20:50):
You have to be very clean mentally and to have exercises breathe in, breathing out, because we have to breathe out all the dioxide you have inside. So, it costs but when you are okay, after 10, 20 breath ins like this, you can walk again, you can continue your walk but sometimes it's very difficult. Mentally, it's very difficult, yes.
Marc Miravitlles (21:23):
This is actually very interesting how you describe it, because physiologically, it has an important translation because in COPD, the really important limitation is to breathe out. So, the air is trapped in the lungs. And so, patients, if they don't realize that, if they are not aware of that, they start trying to breathe very quickly. And at the end of the day, what they produce is they keep trapping and trapping and trapping air.
Marc Miravitlles (21:53):
So, what you have to do is to relax, stop, and then to use your partial lips like this and have a long exhalation and try to breathe out all the air you have trapped in your lungs and this will help you to breathe instead of trying to breathe very quickly, which is absolutely bad for the physiology of this disease.
Mo Alsuwaidan (22:17):
Also, what's very interesting is the mind, body connection again. Because in my field, in psychiatry, we also use this kind of breathing that you described for a panic attack, even in someone who doesn't have COPD because it slows down your physiology, your heart rate and as you said, part of it is in the lungs, but part of it is in the mind, and you just need to calm it down.
Mo Alsuwaidan (22:36):
The other thing I was thinking about, and you mentioned this earlier about air pollution, and so I want to ask both of you, maybe I'll start with you, Dr. Marc. How much does the air pollution affect and does it affect people living in different countries or different regions in different countries?
Marc Miravitlles (22:53):
Yeah. Well, it's not really clear whether air pollution by itself causes COPD. Basically, the main reason or the main theological factor for COPD is tobacco smoking. But it's true, and we have a lot of evidence that air pollution may cause exacerbations, may cause episodes of acute increase in symptoms where the patients, as Alfons describe it, they feel terrible, they feel worse, they feel a sudden lack of air.
Marc Miravitlles (23:24):
And we see increases in admissions to the emergency departments in days in which there are peaks of air pollution. And therefore, some of our patients, if they can, they even try to move to areas where there are cleaner air.
Mo Alsuwaidan (23:40):
Alfons, has that affected you, the weather, or the pollution in the air? Do you notice a big difference?
Alfons Vinuela (23:46):
Well, I think everything affects as a pulmonary diseases but we have to avoid all the negative factors. And this is one of the worst for me to breathe pollution in our city in some days, it's not every day. But always the humidity, the cold, so you have to with weather APP, you can see how is the day before you went out home. So, it's better you see the figures of this day to have a clear vision of what happens to you when you go out.
Mo Alsuwaidan (24:36):
And on days where the air pollution is high, would you avoid going out?
Alfons Vinuela (24:39):
Yes. I prefer to stay at home. Yes, I do my routine at home with my stationary bike and a little weight, and I prefer to stay at home, yes.
Mo Alsuwaidan (24:51):
Do you want to leave our listeners with some final thoughts or advice?
Alfons Vinuela (24:55):
Yes. Well, as under my point of view and when I see that the industry and what the sanitary health system pneumologists, psychologists and researchers do their work, but it's also time for patients to be more active and facilitate all these work by participating in studies, research, or programs like this podcast. For me, it has been a great pleasure to be able to collaborate on this episode of the Listen Well Podcast. And I have to say you thank you, thank you very much to invite me.
Mo Alsuwaidan (25:32):
Thank you. And I think your point about patients’ participation, there's actually a field in research in public health called Participatory Action research where patients become part of the research and that's really important. Dr. Marc, any final thoughts to our listeners?
Marc Miravitlles (25:48):
Yes. For those that are not familiar with COPD, remember that COPD can be a severe disease but it's a disease that can be controlled and that we have very effective treatments that can improve quality of life of our patients.
Marc Miravitlles (26:06)
You have seen Alfons; he was diagnosed 23 years ago. It's a particularly severe form of disease associated with alpha-1 antitrypsin deficiency. But despite of that, thanks to the medications, thanks to the training, and in particular, thanks of his attitude, very active attitude and being engaged and positive and doing exercise and taking medications and doing, let's say the right thing, he's still here with us and without need of oxygen yet. So, this is a positive message.
Marc Miravitlles (26:40):
The other important message again, is that COPD is not only a disease of the lungs, it is a systemic disease. And among the systemic manifestations also on depression and anxiety are very prevalent. And we have to recognize that. And we need to work in collaboration with other specialists to improve the quality of life and the survival of our patients.
Mo Alsuwaidan (27:03):
Thank you so much to both of you. I've learned so much, I'm sure everyone listening has learned so much. We appreciate your time, and we honor your experience, thank you.
Mo Alsuwaidan (27:11):
I'd like to invite everyone listening to take a conscious breath and hold it for a few seconds. It's amazing to me, and I kept thinking about this throughout the episode, how some of the key physiological tasks of our body like breathing are so automatic and we don't think about them. And if we had to think about our breathing all the time, I can say I would probably feel distressed, anxious, and maybe depressed sometimes.
Mo Alsuwaidan (27:38):
I'd like to thank our special guests for teaching us so much from the medical perspective, from the research perspective, and from the lived experience perspective about COPD and its links to depression. I think we need to take this disease very seriously.
Mo Alsuwaidan (27:56):
And like other illnesses we've talked about in this podcast, the key is collaborative care, focusing on the mind and the body, and being kind to ourselves and giving back to the community. And I think if we do this, the world and healthcare would be so much better.
[Music Playing]
Mo Alsuwaidan (28:14):
Thank you for joining us, and remember, listen well.