A diagnosis is the first step on a patient’s journey. For those facing a future with Pulmonary Fibrosis, the first thing you need to do is find the right specialist that can offer tailored and personalised support, but this process can be both challenging and hard to navigate. In this episode of “Spotlight on Pulmonary Fibrosis,” we hear from Dr. Katarzyna Lewandowska a pulmonologist from Poland and Radostina Getova a patient advocate and a consultant to IPF patient organisations from Bulgaria. They discuss how to navigate through the process of finding the right specialist and getting access to the right treatment for patients with pulmonary fibrosis.
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 finding the right specialist for my condition, and here with us today are Radostina Gatova, patient advocacy and communication consultant on behalf of IPF association Bulgaria and Dr. Katarzyna Lewandowska, a pulmonologist from Poland. Hello Ladies and thank you for joining us to chat with us today.
Radostina Gatova (00:53):
Dr. Lewandowska (00:54):
Thank you, hello.
Radostina, you're joining us from Bulgaria today. Could you just tell us about your story, why you chose to become a patient advocate and why the topic is so important to you?
Radostina Gatova (01:07):
Thank you for the question. I will start with a small presentation about myself. My name is Radostina Gatova, and I am a co-founder of Idiopathic Pulmonary Fibrosis association Bulgaria and patient advocacy and communication consultant for ADVOXI patient groups. I have many years of experience in the humanitarian and health care field, as well as in dealing with vulnerable groups and patient organizations. Five years ago, having in mind my background in healthcare field and my wide experience in different directions, actual president of IPF association Bulgaria, Mr. Todor Mangorov asked me to help him to create an organization whose main aim is to support, help and inform people with the rare disease Idiopathic pulmonary fibrosis. We had no idea where we should go and what we should be looking for, and we created our association in 2016. We needed and we need motivated, ambitious, communicative, organized and experienced people to pursue, step by step, as far as possible in accordance with the Bulgarian reality, the European ideals, trends and experience in the treatment and care of patients suffering from IPF. So helping vulnerable people has been part of my job as an expert of the headquarters of Bulgarian red cross, it is my part off my current job as the chief expert in the competent authority that deals with management and control of organ tissue and cells donation and transplantation in Bulgaria.
And you also know Dr. Lewandowska personally, tell us about your story, how did you get to know each other?
Radostina Gatova (03:06):
So we met with Dr. Lewandowska in Vienna during our first, or maybe second, meeting, during the CIPFAPANET project, this is the project that gathered all patient organizations in Central and some of them, like our organization, from Eastern Europe, that deals with IPF.
Dr. Lewandowska (03:32):
And then, after this meeting we met in federation, in one of the meetings for the European Federation of IPF.
Okay, so how about you, Dr. Lewandowska, did you always want to become a doctor? How did it all start for you in Pulmonology?
Dr. Lewandowska (03:52):
Well, it is true, I always wanted to be a doctor, my mother was a doctor, and it was my childhood dream to become a doctor exactly the same as she was, and I started my career, wow, over twenty years ago in internal ward, but there is an obligation for doctors studying internal medicine to have some training in different types of specialties, so I had to go to the pulmonary ward as well and I happen to had a practice in institute of tuberculosis and lung diseases, here in Warsaw, and I liked very much, both the respiratory medicine and the atmosphere that was at that work place, and few years later there was a possibility to get a job there, so I used that opportunity, and at the beginning I thought it would be very nice to help people with very common widely spread diseases, like lung cancer or COPD, but then I saw that there are people who really need more, even more help because they have rare diseases, just like IPF, and it was very exciting to help them and to know them. And, as Radostina said, we met during the project CIPFAPANET, because I was also one of the founders of Polish IPF patient’s advocacy group, Patients Society. I am both a doctor and also a patient representative,
Dr. Lewandowska (05:23):
It’s a very funny story, but yeah, I have this double-sided function.
Well, it's wonderful, really, because then you have both sides of the story. So how is it to work so closely with patients with pulmonary fibrosis?
Dr. Lewandowska (05:40):
Well, they are wonderful people and really, I can feel that our work really is worthful, we can help them and we really did a lot in our reality, our Polish reality, which is not very easy for the patients, especially with rare diseases.
Radostina, I would like to ask you now, in your experience as a patient organization representative, what would you say is very important for patients when going to a physician? As in, what are the usual expectations, and are those expectations met?
Radostina Gatova (06:16):
Well, I will try to highlight some very important conditions for successful communication and outcome between patient and doctors. First is trust. If a doctor is an active listener, patients will feel comfortable sharing every piece of information, including sensitive topics, assumptions, related myths and much more. Then is active listening. Patients want a doctor who respects their opinion, listens as they describe health issues and symptoms, and asks follow up questions in order to understand the cause of their illness. The physician should listen to his or her patients without interrupting them or making them feel rushed. Transparency is very important as well, it is acceptable if a physician doesn’t know everything about some illness or diagnosis, but patients expect their doctors to share as much as possible - while patients usually never demand retribution, they do want a confession of the error, and an assurance that the doctor is trying to fix the error. The doctors must always educate their patients on the success rate and the risk involved with related procedures. Effective communication is the other condition that we have to explain to our audience. Illness can suffocate even the bravest of souls. Diagnosis and procedures can be complicated and a patient often feels vulnerable and helpless in medical office. Be respective of their reason for being there. So the last thing they would expect is to walk out of medical office without understanding a word doctor said. It is the physician’s responsibility to explain everything in a way the patient can understand, that doctors don’t get upset or lose patience if they are asked to repeat or clarify instructions. Time is important as well. The doctors should accept that some patients demand more time than others. Instead of rushing and handling five things in ten minutes, they have to pay attention to what their patients are saying. They must learn to value their time; the doctors should allow ample time for their patients to ask as many questions as they want during an appointment. Clear instructions during an appointment, that doctors don’t make the mistake of rushing through instructions at an unintelligible pace. They must be accurate and clear and try to type out instructions that the patients can pick up when they leave. Doctors should always have time to explain and simplify technical and medical terminology, and last but not least, is collaboration between patient and the doctor. The patients understand their body and life better than doctors do, and therefore, they must get their consent before ordering a test or offering treatment. The doctors must talk it through with their patients, until they understand the purpose and implications of test or treatment.
Absolutely, so proper communication from the doctor’s side is extremely important, also to listen and to have patience with the patients, and have a proper bedside manner as well. From the side of the doctor, then, Dr. Lewandowska, do physicians also have expectations of the patients? It’s probably a good idea to prepare yourself for a meeting, but what are the benefits for you, as a doctor, of meeting patients who are prepared and ask the right questions?
Dr. Lewandowska (10:46):
Yes, of course, what was said by Radostina is very important, everything it is very important, but its extremely demanding for a doctor. It’s true that we don’t have a great amount of time for every patient, and we really sometimes must hurry, and for me this is the most difficult thing during meetings with patients, and especially in the outpatient clinic, when there is a really big group of patients waiting at the door and I have just so many time as I have, so it is very nice if the patient can describe their complaints precisely, and it would be also good, if the patient has the information prepared: what are his or her main complaints? If they have listed those complaints, and if they know when did they start, if they are constant, or if they progress, it is very important for the diagnosing and then for the treatment. The second very important message is what other diseases the patient has, what for other diseases the patient is treated, and what medication he or she takes. It is extremely important to know the names of the drugs, because the pills have different colors, but we don’t know every pill by the color.
Of course, yeah, I was a doctor’s office myself yesterday, and the receptionist there was asking the lady who was going to get a vaccination, a COVID vaccination, what medication she was on, and the lady didn’t know the name of her own medication, so it’s understandable, yes.
Dr. Lewandowska (12:29):
Yeah, it makes our work really easier if the patient knows. I don’t think that every patient can know all the medication by heart, but the piece of paper where all medication is listed, it is really a great help for us. And of course, other things, like, for instance, allergies. If the patient received some drug before, and has allergy to that drug, it should also be listed on that piece of paper, that we know what we can give the patient and what we can’t. So some, some information for us about the complaints, about the accompanying diseases, about the medication the patient takes, and allergies. These are the most important things, and it will help us to have the time for the patient to listen to him, because it will be a little bit structurized, and we we won’t have to ask so many questions, if the patient tells us everything in that structurized manner.
Absolutely, and Radostina, as a patient organization representative, I believe you have a question for Dr. Lewandowska about this?
Radostina Gatova (13:41):
Yes, thank you. So, Dr. Lewandowska, you mentioned many of the conditions that patients have to follow, but are there any specific questions that patients or family should be prepared to answer, and can you recommend where to find good sources to help them be prepared?
Dr. Lewandowska (14:06):
Well, it’s a difficult question. It is the problem to find a good source. I think that websites are quite good sources and especially the websites of patient advocacy groups. The patient can, for instance, read about the disease, and then think, if I have that or that or that symptom, and then prepare himself for the questions that may be asked. It is always a basic question: What is the problem? So, what are the symptoms that bring the patient to the doctor, and it should be listed at the top of that piece of paper, what are the main problems and the time when they started, it is also a very important thing. And remembering that before the patient comes to the doctor makes this appointment much, much easier.
Of course, yeah, it goes without saying that getting a diagnosis is a key step on the patient journey, but once that's done, what happens next then? Finding the right specialist for your condition can appear to be challenging, but help is available, mainly in the form of people like you, Radostina. Where can patients begin to look to find the right specialist? Let’s say they are newly diagnosed, where should they look and what role does your patient organization, for instance, play in supporting patients looking for specialists?
Radostina Gatova (15:40):
Yes, it is most important to find one specialist the patient can trust, with whom he or she can communicate well and establish a long-time relationship. When a person feels bad, he goes to the general practitioner first, who must refer him to a specific specialist according to the patient’s initial complaints. After the specialized examination and diagnosis by a specialist it is good to hear a second opinion from another specialist. If the disease is confirmed, then therapy is already prescribed and guidelines are given for the course of the disease and its treatment. As these are rare diseases, their treatment is concentrated in specific health institutions, at least in Bulgaria, which are publicly known, and specialists are very few. Patients can get information directly from there. Patient organizations are another source of information, and last but not least, the patients can receive information from their general practitioners, who should know the right hospitals or clinic where the patient can receive an adequate examination.
Right, and Dr. Lewandowska, from the other side, from the doctor’s perspective, what are your recommendations to newly diagnosed patients, or ones who perhaps suspect that they have the condition? And what about also already diagnosed patients, how can they find out which specialists or physicians that they should meet at the different stages of their journey?
Dr. Lewandowska (17:27):
Well, in my opinion, the first and most important doctor to the patient is his or her general practitioner or family physician, and if the family physician is a clever, educated doctor, he will know where to refer the patient if there are some difficulties in diagnosing. It is not the role of family physician to diagnose the rare condition, because they have majority of patients with very common diseases, and they should stick to them, they should diagnose and treat them, and the patient who comes with a rare condition should be immediately referred to a specialist. And as Radostina already said, the general practitioner should know where to refer the patient. Sometimes it is the respiratory specialist in outpatient clinic, and this specialist may prescribe other tests, like spirometry or HRCT to diagnose the patient, and sometimes the hospital referrals need it, so it is difficult to say to every patient what happens next, but in general, everybody, I think all people know that if they have dyspnea or cough, they should be referred to the pulmonary specialist or to the cardiologist, so probably the most frequent referrals would be referred to the pulmonary specialist, or to the cardiologist, so probably the most frequent referrals would be to those two specialists, and then the proper specialist will diagnose the patient or refer to the specialized center for the diagnosing of rare disease.
We keep coming back to the general practitioners, they are extremely important individuals as well. Radostina, I believe you have another question or a couple of questions for Dr. Lewandowska.
Radostina Gatova (19:20):
Yes, thank you Dr. Lewandowska, but can you explain us when we are talking about different cases of pulmonary fibrosis, what would be the right physician for patients with, example, autoimmune disease with ILD and IPF idiopathic pulmonary fibrosis? Let’s make a step back and start from the beginning, in the most cases, who would be the first physician seeing a patient with a potential IPF diagnosis?
Dr. Lewandowska (19:57):
I already said the first physician is always the family physician, so the general practitioner, and the general practitioner, at least in Poland, has a very restricted number of tests that he or she can prescribe, so, in most cases, this is only spirometry and the plain x/ray, but the family physician has also the possibility to examine the patient, to auscultate the patient, to ask the questions that are most important, so when the family physician has the patient with progressive dyspnea and with crepitations or crackles, Velcro crackles, during auscultations, and for instance with fingers clapping and spirometry is normal or almost normal and the x-ray is also not very bad, it may reveal slight lesions in the sub pleural regions, then the family physician should know that this is the disease that is not very common. In many cases, the family physician performs something like treatment trials, he or she starts to treat the patient for the most common diseases, like for instance COPD or heart failure, but then if the patient doesn’t improve, if the symptoms remain stable or even progress, the referral to the specialist should be very quick. And this should be the respiratory specialist, The first referral from general practitioner should be to respiratory specialist.
Radostina Gatova (21:38):
Thank you, so to the question about your recommendation, how patients can fast find the right specialist, your opinion is?
Dr. Lewandowska (21:52):
This is a very difficult question. I guess, that in many countries, the waiting list for specialists appointment is very long in Poland. It may be even three or even more months from the referral to the appointment. And three months, It's quite a good result, really. It may happen that it is really longer. So, the patient may ask for help from, for instance, the patients advocacy group, because sometimes there are other contact possibilities between the patient and the doctor, like for instance, the online consultation or a phone consultation when the patient may talk to the doctor. But in most cases, this is very informal way. So through the patient advocacy group, for instance, but this formal way to find the clinic where this waiting time is the shortest, yeah. And it is not always the easiest one
I can imagine, yes, I know stories from Ireland too, where patients have to wait a very long time to see a specialist. In Austria we are a little bit more lucky with our, with our health system here. So access to specialist physicians and treatments can be challenging. Radostina, you know all about these challenges. Could you tell us a bit about what those challenges and barriers are that patients experience when it comes to accessing the right diagnosis and treatment?
Radostina Gatova (23:29):
It is very difficult. Regarding challenges, every country and every health system faces different challenges and barriers. I can identify several that are essential for diagnosis and access to specialized care. First, general practitioners have a limited knowledge of IPF or PF or training in recognizing the disease. Its symptoms are therefore sometimes confused with those of other lung diseases. Additionally, genetic testing is not widely performed, not even when another family member has IPF. This further complicates the diagnostic process. Second, timely access to specialized centers and multidisciplinary care has been flagged as a factor that can make a real difference for patients. Countries where patients have access to multidisciplinary teams perform better in the diagnostic process, resulting in a better experience for patients. Other barriers is non pharmacological treatment options, such as pulmonary rehabilitation, oxygen therapy, psychological support and a lung transplantation, are essential for holistic IPF care, and to improve patients quality of life. Lung transplantation is currently the only curative form of treatment; however, transplantation comes with its own set of challenges. Access is limited, there are intrinsic risks associated with the procedure, and of course, there is a limited availability of organs. Access to palliative care and life care is the most fragmented area across Europe. In principle, it should play a key role in holistic IPF management, however, it is not sufficiently embedded in IPF care and it is not available or reimbursed in most countries. In Bulgaria as well. As a conclusion, we can say that people living with idiopathic pulmonary fibrosis need to overcome major hurdles during their care journey. Challenges currently occur at all stages, this include diagnostic delays, lack of available treatments and care, and difficulty in accessing appropriate health services. As a result, patients, their families and carriers feel isolated, unsupported and economically curtailed.
Dr. Lewandowska (26:33):
Radostina you spoke there about access to treatment, I believe you have a question for Dr. Lewandowska about that?
Radostina Gatova (26:41):
Yes, Dr. Lewandowska, please, can you explain us, the patients that live in a rural areas, far away from specialized centers, how they can get to the center and to receive treatment, what can you do if you don’t live near a specialized center as well?
Dr. Lewandowska (27:06):
Well, I think the teamwork that you mentioned is the most important thing, because we as the respiratory specialist, we are not a huge group of specialists, at least in Poland, so we mostly know each other and it is very rarely that the specialist that works in some rural area, or in a small city, doesn’t know the center where the patient should be sent to receive the proper diagnosis. So the most easy way is just to take a phone and make a call, or write an email to the specialist in some specialized center, and sometimes those patients who live far away from the big centers, they may be referred straightly to hospital, because it is easier to send the patient to the hospital and leave him for a few days at hospital, perform all the tests at the same time, it’s better for him then to travel several times for every test separately. So this is the easiest way. It shouldn’t be of course overused, because, of course, we don’t have enough beds at hospital to help all the patients, if we just put all the patients with interstitial lung diseases to the hospital, but sometimes this is the only way when we can give the patient the chance for a proper diagnosis.
Is it, if they don't live near a center, and they already have their diagnosis and they already have their treatment, is it easy for them to treat themselves?
Dr. Lewandowska (28:49):
No, I think that in rare diseases, especially in such disease as idiopathic pulmonary fibrosis or pulmonary fibrosis at all, it is a very specialized disease, and the patient must have the continuous contact with his/her Doctor. It’s not always the personal contact, but at least on phone. It’s really easier to make the decision if we have the contact of the patient to the patient can call us every time when he or she has any doubts.
Right. And would there often be for instance, with pulmonary fibrosis, would there be an emergency situation?
Dr. Lewandowska (29:32):
Not very often, but it happens. The acute exacerbation, which is the most dangerous health problem in patients with IPF, they happen in less than ten percent of our patients, and usually it is like the patient is referred to some kind of district hospital to medical ward, and then the doctors from that hospital call us and ask us to take over the patient.
I see. Well, I think we will wrap it up there ladies. It’s been an absolute pleasure talking to both of you today with the wonders of modern technology. I would like to thank you for the interesting and extremely informative conversation, and wish you both a great day and thank you.
Radostina Gatova (30:18):
Thank you. Thank you very much for the opportunity.
Dr. Lewandowska (30:22):
Thank you very much.
One more question. Are you two going to be meeting anytime soon again?
Dr. Lewandowska (30:27):
We hope so.
Radostina Gatova (30:28):
We hope, at least me.
Dr. Lewandowska (30:31):
Yeah, me too. It is always better to meet in person and we really did a lot good things for patients when we are meeting.
Absolutely. So let's hope for some conferences where you can see face to face in the next year, at least at some stage. That would be great. Ladies thank you so, so much for joining us and take care.
Radostina Gatova (30:53):
Thank you. Take care, you too.
Dr. Lewandowska (30:55):
Take care also. Everything the best, bye.
Radostina Gatova (30:59):
Great. That was really wonderful.
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