Lung Health & RSV: Podcast of a Patient–Physician Discussion Based on Insights from a Patient Advisory Board Meeting

00:00:00: You are listening to an ADIS journal

00:00:03: podcast.

00:00:11: Hello and welcome to this podcast on lung health and respiratory sensational virus, a patient physician discussion based on insights from a patient advisory board meeting.

00:00:21: Here we will summarize insights shared by patients during an advisory board meeting about respiratory sensational virus, also known as RSV, and lung health in older adults.

00:00:31: The podcast development was funded by GSK and patients were involved in its preparation.

00:00:36: It's aimed at anyone interested in respiratory viruses and lung health and might be of particular interest to primary care and respiratory healthcare professionals.

00:00:45: My name is Bella Vazza and I'm an Associate Medical Director at GSK, a pharmaceutical company active in the field of respiratory health.

00:00:52: In December, I had the privilege to meet, listen to and see insights on RSV and lung health from a group of five people during an advisory board meeting initiated by GSK to address the knowledge gaps about patient perspectives on the risk of RSV and the lived experiences of those who have had RSV.

00:01:11: During this patient-centred meeting, we sought to understand patient perceptions on lung health, respiratory conditions, including RSV, and the many impacts that these conditions may have on an individual's life.

00:01:22: Before we go further, I would like to clarify that when we use the term patients here, we mean individuals who happen to have experienced RSV or have an underlying condition that makes them more susceptible to severe RSV.

00:01:33: I'll use the term participants for the rest of the podcast.

00:01:37: Lucy McNeill, one of our five participants who attended the meeting, a dedicated patient advocate and chair of the Aspergillosis Trust is here with us today to share some of the pertinent points of our discussions.

00:01:48: Hi, Lucy.

00:01:49: Hello

00:01:49: Bella and thank you for that kind introduction.

00:01:52: Can you tell us a bit about yourself and the other participants?

00:01:55: Yes of course.

00:01:57: We were five participants from the UK and Austria.

00:02:01: I live in the UK.

00:02:02: I'm in my fifties but the other participants were in their sixties.

00:02:07: Four of us have underlying respiratory conditions.

00:02:10: I myself have bronchiectasis and aspergillus broncharitis, both considered rare diseases.

00:02:17: And the others in the group have asthma, which is of course very common.

00:02:22: Of the five of us, three have experienced an RSV infection in the past, including myself.

00:02:29: And whilst we are all concerned about lung health and now RSV, prior to the meeting, two of the participants have never heard of it.

00:02:37: Thank you for this nice overview, Lisa.

00:02:39: We're also joined by Fritjof Kossfeldt, a licensed physician now working at GSK, to give his reflections on what the participants shared at the meeting.

00:02:47: Hey, Bella and Lisa, thanks for having me today.

00:02:51: Before asking Fritjof for information about RSV and its burden, I'd like to invite Lisa to describe the participants' understanding of RSV.

00:02:58: Thank you, Bella.

00:03:00: Well, I think it's fair to say that we didn't know a lot about RSV, which is probably the case for most people.

00:03:06: Two of the participants had never heard of this virus and interestingly they had also never had a diagnosis of RSV.

00:03:14: I myself only discovered what it was after seeing it on my hospital records and looking it up.

00:03:19: One participant had been unlucky enough to get it twice and they shared with us that both of these times led to pneumonia.

00:03:25: so they have a real appreciation of what RSV can do.

00:03:30: Someone said that they thought it was a children's disease before they'd experienced it themselves.

00:03:35: Frithoff, would you agree that awareness and knowledge about RSV is generally low?

00:03:39: Yeah, Lisa, I absolutely do agree.

00:03:42: And for the audience, it should be noted that RSV is a common pathogen that can cause respiratory illness, just like, for example, the flu.

00:03:52: And the similarity of symptoms with other respiratory infections in combination with lack of routine testing may, by the way, be responsible for the underreporting of RSV in the adult population.

00:04:06: And although the disease can affect the upper respiratory tract with cold-like symptoms, it may also affect the lower respiratory tract, and that is including the lungs.

00:04:19: And to add to what Lisa was saying, it is true that the high burden of RSV in infants has been documented actually since the nineteen sixties and has received a lot of attention due to the potential for these fatal outcomes.

00:04:34: So the burden of RSV is high in infants, particularly in low and middle income countries.

00:04:40: And this is indeed widely recognized.

00:04:42: However, in adults, the impact of RSV is still under-recognized due to the lack of awareness and routine testing.

00:04:52: It is now established that adults older than sixty years and adults with certain medical conditions that is including chronic respiratory conditions are in fact at increased risk of severe RSV infections compared to those without these conditions.

00:05:09: So this means the odds are higher for them to experience complications such as pneumonia, bronchiolitis, as well as exacerbations, meaning a worsening of their existing chronic heart failure condition or respiratory comorbidities.

00:05:26: This is why it is so important for the public to be aware of RSV and its associated risks.

00:05:32: Thank you, Lisa and Fritjof.

00:05:33: So if I can summarize, the burden of RSV in children is well known.

00:05:37: but RSV can have very serious consequences in adults as well.

00:05:41: This is even more true for people living with conditions that can get worse or put them at risk for severe complications when infected by RSV.

00:05:49: It's therefore important that they're aware of how RSV can impact their health.

00:05:53: Lisa, you've already mentioned several of the participants who are not aware of RSV and its risks.

00:05:58: What were the participants' experiences of knowledge in healthcare professionals?

00:06:03: Yes, it was indeed felt that there is a general lack of awareness around RSV and lung health, including with HTPs.

00:06:11: Participants in the meeting who had experienced an RSV episode shared that the doctors they saw, especially those in first-line care settings, seemed generally not sufficiently informed about RSV and other respiratory conditions.

00:06:26: although I personally would think that they would be the best people to actively provide information, certainly to people like me who are at risk from RSV.

00:06:35: One participant also highlighted the importance of an actual RSV diagnosis as its treatment is completely different to bacterial infections.

00:06:45: In his experience, the diagnosis was initially missed by both his GP and his chest clinic doctor.

00:06:53: Yeah, we have I think already highlighted the importance of being aware of RSV for those at risk of severe infection and Lisa it is absolutely true as you just said that the general healthcare practitioners who we refer to as HCPs would be ideally positioned to provide meaningful information about the risks of RSV.

00:07:16: So regarding the diagnosis the viral nature of the pathogen can be easily missed without appropriate testing.

00:07:24: So overall RSV awareness among HCPs has the same caveats as with the public.

00:07:31: It is mostly seen as a pediatric infection and the older population and those with comorbidities are unfortunately often not considered in this conversation.

00:07:43: And in my opinion, HCPs should be the first line of defense, being aware of the risks for their patients and advocating prevention measures such as vaccination of vulnerable populations when appropriate, hand washing, avoiding close contact with someone who's ill with a respiratory infection.

00:08:04: And we're seeing that recent awareness campaigns have helped to increase awareness of RSV in older adults, whether chronically ill or not.

00:08:13: But there's always room for improvement, of course.

00:08:16: So thanks, Richard.

00:08:17: Can you explain a bit more about who is at risk of severe RSV infection?

00:08:22: Yeah, absolutely.

00:08:24: So I would say anyone with a decline in immune function will be at risk of severe RSV infection or RSV-related hospitalization.

00:08:37: And the immune function decline, it comes with aging, you know, even in healthy people.

00:08:42: But respiratory conditions such as COPD or chronic obstructive pulmonary disease, asthma or bronchiectasis are also important risk factors due to their potential in weakening the immune function.

00:08:58: So other chronic conditions such as chronic heart failure, diabetes, mellitus have been identified as risk factors as well.

00:09:07: One can imagine that people living with diabetes, they don't necessarily feel at risk of RSV, but statistically speaking, they are at greater risk of severe RSV infection than non-diabetic patients.

00:09:22: So for example, in one study that included RSV, patients with hyperglycemia, meaning elevated blood glucose levels, were found to be at greater risk of severe disease.

00:09:35: And other evidence also indicates that people with diabetes mellitus are at greater risk of developing serious clinical outcomes, such as hospitalization, pneumonia, when they do indeed get infected with RSV.

00:09:48: We're also seeing underlying cardiovascular disease as a risk factor for severe outcomes from respiratory infections.

00:09:56: Although limited evidence is available for RSV at this moment, it is likely.

00:10:02: that RSV infection increases the risk of exacerbating certain underlying cardiac conditions, such as heart failure, as was demonstrated with flu and COVID-IX infections.

00:10:14: So these are convincing arguments that RSV should indeed be taken seriously by both the public, but also the HCPs.

00:10:23: Yes, and for those of you who experienced it, RSV certainly wasn't trivial.

00:10:29: In one person it caused difficulty breathing and wheezing.

00:10:34: And in two of us RSV did lead to hospitalisation with symptoms such as significant pain, loss of appetite and even an inability to lift their head.

00:10:47: That person had to take a full month off work to recover.

00:10:50: Yeah, and you know, the recovery can actually take several months in older persons.

00:10:56: So even though RSV infection is typically mild, it can lead to serious complications and poor outcomes, especially in those at risk.

00:11:07: And these underlying conditions, as discussed before, asthma, COPD, chronic heart failure can be worsened by an RSV infection.

00:11:17: And some attempts have actually been made to assess the burden of RSV.

00:11:22: And when we're looking at high income countries where we have surveillance data available, it has been estimated that sixteen hundred and twenty acute respiratory infections, one hundred and fifty RSV hospitalizations, and eleven RSV deaths occur every year per one hundred thousand adults, aged sixty years and older.

00:11:45: That's a lot.

00:11:46: Thank you for your trust indeed.

00:11:48: We can thus say that people at risk of RSV are often unaware of the disease and that this gap could be addressed through HCPs, but they also need to be aware of the disease and its impact.

00:12:01: Lisa, so from this insight shared during the meeting, it was felt that chronic respiratory conditions and more broadly lung health is easily overlooked by people.

00:12:11: Can you tell us a participant's view on this?

00:12:13: Yes, exactly Bella.

00:12:15: We felt that lung health is often neglected among older adults and HCPs.

00:12:21: When compared with heart or brain health, most of us concluded that an awareness of lung health often comes to people after the diagnosis of a respiratory condition, though education on preventive measures such as a healthy diet, a smoke-free lifestyle and exercise could help everyone to maintain good lung health.

00:12:42: Numerous resources can be found for cholesterol and heart management, for example, providing practical awareness on food and exercise that can be adopted as self-help for risk mitigation.

00:12:55: And I believe that such material should be available for lung management as well.

00:13:00: Depending on their respiratory condition, people often adopt additional preventative measures.

00:13:06: And from my personal experience and also discussions with others, both at and outside of this meeting.

00:13:13: There is a real fear of exacerbation with some long related conditions and environmental factors have to be considered.

00:13:22: Some people are afraid of germs and therefore they don't use public transport.

00:13:27: Many patients with certain lung conditions avoid wet and damp days.

00:13:32: Some can't go out if it's windy or foggy because they simply can't catch their breath.

00:13:37: And then others, like myself, have to avoid the autumnal weather due to a fear of increased aspergillus spores, whilst others suffer more in hot weather.

00:13:47: However, these measures can lead to self-isolation, which is also a burden as it limits our freedom to take part in activities.

00:13:56: We were all aligned on the fact that this type of enforced isolation has a detrimental effect on mental health.

00:14:04: Having a respiratory illness would force us from time to time to go into self-imposed isolation, whether that's to protect ourselves or to deal with the worsening of our existing condition.

00:14:17: And this really takes a toll on mental health.

00:14:20: And of course, it can easily be overlooked because physical symptoms such as breathlessness or fatigue often come to mind when first describing the consequences of poor lung health.

00:14:30: Of course, the physical impact is easier to describe.

00:14:33: One of the participants talked about how their respiratory condition impacts their daily life.

00:14:39: And I quote, I get breathless just going to work.

00:14:42: I get breathless just getting dressed in the morning.

00:14:46: But it can equally affect mental health through loneliness, depression, forgetfulness, or in my case, brain fog.

00:14:57: Yeah, Lisa, I think we can undeniably say that some people with these chronic lung conditions may need specific mental health poured to aid in managing the mental impact of their illness.

00:15:09: And yeah, Lisa, you already listed some of the many, many aspects of life that can be affected when you live with a respiratory conditions.

00:15:19: And so I would probably describe the impacts on three different levels.

00:15:25: I think there is.

00:15:26: obviously the physical level, but there's also an emotional and a social level.

00:15:31: As Lisa mentioned, physical symptoms are probably the first to come to mind when thinking about respiratory conditions.

00:15:38: For example, shortness of breath, persistent coughing, wheezing or fatigue are commonly experienced by our patients.

00:15:47: And this can directly affect their ability to perform basic tasks and daily routine such as climbing stairs or cooking.

00:15:55: Breathlessness and the fear of it may also lead to reduced activity, further diminishing, you know, the physical fitness and independence of that person.

00:16:05: On the social level, respiratory conditions can absolutely limit their ability to participate in family activities, you know, playing with your grandchildren, meeting your family, meeting your friends, and the self-forced isolation.

00:16:21: Lisa outlined that really nicely.

00:16:24: I think these respiratory conditions can absolutely force patients to avoid environments such as smoky areas, homes with pets, restricting their social engagement.

00:16:36: On the emotional or mental level, having a respiratory condition can provoke a feeling of frailty.

00:16:43: Knowing that the risk of severe illness and vulnerability to RSV or flu, COVID-IX, other viral infection, it's high.

00:16:54: And that emotional toll is a consequence of the physical and social limitations that we just mentioned.

00:17:01: And constant longing to fully participate in life while feeling physically limited is something that patients then experience.

00:17:10: Lastly, respiratory conditions cause mental strain for patients to anxiety, you know, about sudden health crises, flare-ups, or hospitalizations.

00:17:22: Yes, can I just add to what you just said?

00:17:24: Also, the visible symptoms of respiratory conditions often come with stigma, especially since the COVID-IX pandemic.

00:17:34: coughing and bringing up mucus, for example, are a source of embarrassment for many people, which also limits their social interactions because it makes them feel ashamed in public.

00:17:46: Together, these factors contribute to the psychological burden.

00:17:52: During our discussion, one of us pointed out the invisible nature of this struggle.

00:17:56: For example, when people say, Oh, you look so well, just not realising all the drugs, the nebulising or all the other things that they've had to do just to get through the day.

00:18:09: This shows how the burden of respiratory conditions may affect people who look healthy.

00:18:15: Thank you both for your insights.

00:18:17: I do understand from what you're saying that these conditions really do impact many aspects of a person's life.

00:18:23: and it's something that many HCPs just may not be aware of or think about, but it is important to patients, so it's great that we're able to share that today to raise awareness of the hidden impact of living with these conditions.

00:18:36: The next important insight shared by participants for the meeting is their perceived need for more support from the health care system.

00:18:42: Patients stated that they would like more guidance from HCPs about how to manage their respiratory conditions.

00:18:47: As mentioned by you, Lisa, when you spoke about long health awareness.

00:18:51: Yes, yes, this was indeed something felt by the majority of us and at different levels.

00:18:57: I mean, management of our respiratory condition often needs more than the standard advice on medication and we would like to see a more holistic approach from doctors.

00:19:07: I mean, it's always nice to receive guidance on lifestyle changes and prevention that will help to maintain good lung health.

00:19:15: Of course we understand that GPs have to deal with a broad range of illnesses and disorders and that they cannot be experts in everything.

00:19:23: However the management of a respiratory condition is mostly about dealing with several symptoms and it is nice when you can discuss these concerns with your GP just to figure out how to alleviate the symptoms.

00:19:37: Of course, specialists may help a lot by providing useful techniques such as physiotherapy and lung clearance.

00:19:45: And a GP should be able to provide lifestyle advice and changes, as well as to identify when a patient needs to be referred to a specialist.

00:19:53: No, that's a good point, Lisa.

00:19:55: I think GPs indeed play a central role here.

00:20:00: You know, they're often the first point of contact for patients experiencing symptoms and they should have all the tools needed to adequately diagnose, treat, and of course advise a patient as well.

00:20:14: However, this is often easier said than done and unfortunately proves more difficult in practice, you know.

00:20:22: due to a shortage of resources, a shortage of doctors, and just a shortage of time spent with each individual patient, I think these needs are not always met.

00:20:35: They also play a large role here.

00:20:37: They're responsible for equipping our HCPs with the sufficient resources and the time to adequately diagnose, treat, and advise.

00:20:47: But we HCPs should try our best to make the time to check in with patients to understand what they need other than just a prescription and provide advice on health maintenance beyond the episode that brings them to the clinic, whether that be lifestyle changes or changes or prevention through measures such as vaccination.

00:21:07: And it's interesting, during the discussion, I did notice that patients seem to have low expectations of the level of support they're likely to receive from the healthcare system.

00:21:17: For example, several participants agreed that they would self-manage a respiratory infection with rescue treatment and only contact their HCP or respiratory consultant if they didn't get better.

00:21:28: Yes, Bella, sadly, that is true.

00:21:31: As patients, we need to be very proactive, essentially driving our own treatment, be that for an infection or just one of the symptoms related to a respiratory condition.

00:21:43: But we do often need more information around the interplay between respiratory conditions and other infections.

00:21:50: When you're dealing with multiple respiratory conditions or diseases it can be very challenging for assessing which condition it is that's triggering a particular episode or illness or symptom.

00:22:02: And obviously these days many GPs will not issue antibiotics due to misuse and inappropriate use and of course antimicrobial resistance and it often makes sense.

00:22:14: However, in a patient with a chronic lung condition and many, many years of experience, I believe that they could be trusted to know what is needed.

00:22:23: So they sometimes need to make their own assessment of the seriousness of their symptoms and the need for antibiotics.

00:22:29: Yeah, Lisa, I do agree with you.

00:22:31: I think it's critical that as clinicians, we recognize the depth of knowledge that many patients have about their own respiratory conditions.

00:22:41: And I think especially those living with chronic lung disease for years.

00:22:47: They often know the nuances of their symptoms better than anyone.

00:22:52: So rather than taking a top-down approach, we really should be working with patients, layering our clinical insights on top of what they already know and yeah, include them in the decision-making.

00:23:05: So of course, one of the real challenges we face in primary care is time.

00:23:10: And GPs are often working with very tight appointment slots.

00:23:14: And having those in-depth conversation, you know, really exploring how different conditions might be interacting, it takes time and we don't always have that.

00:23:24: But

00:23:24: even with these constraints, I agree that, you know, making space for patients' voices, treating them as partners in the care, it's essential.

00:23:34: And it's not always easy to do in a system under pressure.

00:23:37: But when we do get it right, it does lead to much better outcome, a stronger sense of trust.

00:23:43: And I think that's on both sides.

00:23:45: Yeah.

00:23:45: So I can really see how it's key to help patients in the daily management of their respiratory conditions and treat them as partners really in managing their health.

00:23:54: We already discussed the lack of awareness, but didn't really elaborate on the available sources of information.

00:24:00: From the discussion, I did note that people's uptake of educational material and information is really based on the source of that information.

00:24:08: Yes.

00:24:09: I mean, we definitely want to avoid generic web searches that will bring up all sorts of scary content.

00:24:17: When discussing web searches, one of us compared the results of a Google search to a minefield because it is difficult to assess the accuracy and the reliability of the available results.

00:24:29: And the information you will get will often be frightening and not very balanced.

00:24:34: So Lisa, how do you assess or validate the information that you find when searching on the internet?

00:24:40: Well, I usually try to confirm that it has been validated in some way by trusted knowledgeable people.

00:24:48: Similar to most patients, I'm more likely to trust information that comes from an unbiased source rather than say a commercial organisation.

00:24:57: We all agree that patient groups and experienced patients are usually trusted sources of a balanced, easy to digest and constructive information.

00:25:08: And following a diagnosis, researching patient groups and hearing from others who have similar experiences is often the first step when looking for information.

00:25:17: Contact with other people who share common experiences is helpful, particularly for our mental health and preventing feelings of isolation.

00:25:30: While it can also be depressing due to a sometimes pessimistic view of your condition, Being part of the patient networks makes it easy to reach you whether that's via text messages and it gives you access to information through apps or dedicated websites.

00:25:46: Obviously, of course, having said all that healthcare practitioners remain the best option for providing personal medical advice.

00:25:54: Yeah, I think that's a good point, Lisa.

00:25:56: And I also believe HCPs can really help with identifying reliable information.

00:26:04: evidence-based websites, these kinds of materials.

00:26:07: So discussing trusted educational material and patient websites is a great way for the HCP to engage with the patient and foster self-learning and also accountability.

00:26:20: So HCPs can also, you know, they can act as somewhat fact checkers, helping to identify any red flags, critically appraising information such as, you know, answers from artificial intelligence powered bots, AI, because as we can imagine, these are increasingly being used.

00:26:40: And, you know, while they generally deliver complete and accurate drug information, their answers can lack readability and may even be incorrect or harmful.

00:26:51: So what I take from that discussion is that patients want to be informed and that information needs to come from a trusted source, such as patient organisations and HCPs.

00:27:02: And that really underlines the importance of education and awareness in HCPs, to be able to support patients, to become better informed and better equipped to make these health decisions.

00:27:13: Lisa, as we come to the end of our podcast, can you tell me what you took away from the advisory board?

00:27:18: Yes, of course.

00:27:20: It was really interesting actually to exchange our thoughts about lung health and RSV.

00:27:27: We all observed that there is a need for greater awareness about respiratory conditions and RSV.

00:27:33: I also found it very useful in this podcast to discuss the connection between RSV and underlying conditions.

00:27:42: I believe these types of insights are exactly what patients need and I also appreciate being able to share with doctors what patients need from them to help doctors work with us to manage our health and our illness.

00:27:55: Thank you Lisa.

00:27:56: I do agree that participants express what we suspected about RSV awareness among patients, that there is a lack of it, particularly about the impact it can have on adults that increase risk from spiritual infections, whether that's physical, social or emotional, as Richard elaborated on.

00:28:12: What was insightful for me was that patients want broader health advice on how to maintain their lung health and therefore it's important to raise awareness in HCPs, being the ones that can educate and support their patients to make health and lifestyle decisions such as smoking cessation, getting vaccinated or healthy eating to maintain their health.

00:28:31: We hope this podcast will help to foster more and better informed conversations around lung health and RSV among those people who are at greatest risk, as well as the healthcare professionals who support them.

00:28:42: I would also like to take this opportunity to once again thank Lisa Fritchoff and all the participants at the advisory board for their time, invaluable insights shared during the meeting and their input into this podcast.

00:28:55: For the purposes of transparency, I should also note that the discussions during the advisory board meeting were supported by two facilitators from GSK, including myself.

00:29:04: Transcripts of the discussions were prepared by Seniors Health and served as the source material for the preparation of this podcast manuscript.

00:29:12: As participants are in the meeting and following careful discussions and critical review of the content, each of my co-authors qualifies for authorship according to the ICMJE recommendations.

00:29:24: The meeting and the preparation of this podcast manuscript were funded by GSK.

00:29:28: Writing and technical support were provided by InoverLive Medical Communication Service Centre.

00:29:34: With this, I think we can bring this podcast to a close.

00:29:37: Thank you again, Lisa and Fritjof, and thank you all for listening.

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