
As a chronic condition, glaucoma requires long-term management through daily administration of eye drops to control intraocular pressure and prevent progression and vision loss. A number of diverse factors can influence this process and affect the overall outcome.
In the latest episode of All Eyes On, we marked World Glaucoma Week (6-12 March 2022) with a glaucoma patient, a behavioural psychologist, a glaucoma expert and Santen EMEA's Vice President of Medical Affairs. Together we explored how human behaviour can help or sabotage our best efforts to manage glaucoma.
The panel discussed some of the reasons behind eye screening hesitancy, explained why the HCP-patient relationship is so important, and reflected on the critical role of early detection and diagnosis in long-term disease control.
You can also read or hear (by enabling the screen reader) the full discussion below:
Professor Oddone: Communication and alliance with the patients is really critical to inform about the condition and the importance of taking regularly the medication, and in order ultimately to succeed together, physician and patients, to prevent visual loss.
Phil Graves: We have to recognise that people aren't rational creatures. So clinical reasoning is one thing, but that won't determine what people ultimately do. It's really important for patients themselves to try and develop an understanding of what's realistic for them in terms of taking medication and to work with the healthcare practitioner, who should also be trying to understand the patient's lifestyle to come up with the best regimen for dealing with this condition over the long-term.
Siân Boisseau: Welcome to ‘All Eyes On’, a podcast bringing together expert views on some of the most pressing topics in ophthalmology in our health, brought to you by Santen. I'm Siân Boisseau, Head of Communications for Santen in Europe, Middle East and Africa. This time, we're marking World Glaucoma Week, which is from the 6th to 12th of March this year and is a global initiative from the World Glaucoma Association, the WGA, and it aims to raise awareness of the condition. I'm joined by a panel of experts for All Eyes On: World Glaucoma Week special. We'll be discussing how human behaviour can help or even sabotage our best efforts to manage glaucoma – on what everyone, the public, healthcare professionals and patients, can do to improve the management of what is commonly referred to as the silent thief of sight. Welcome Professor Francesco Oddone. Can you explain in a nutshell what glaucoma is?
Professor Oddone: Hello Siân and hello everyone, and thank you for having me here. Thank you for this question. I would define glaucoma as a chronic, progressive, potentially blinding and irreversible eye disease, which is characterised by the degeneration of the so-called optic nerve, which is the nerve which delivers the visual information from the eye to the brain. Glaucoma is known to be the second most common cause of irreversible blindness and affects an estimated 76 million people worldwide, a number projected to increase to over 110 million by 2040. Actually, this is often referred to as a silent disease as most patients have no early symptoms. It has to be highlighted that our best defense against sight loss caused by glaucoma is an early diagnosis that can be easily done by a regular eye check.1-3
Siân Boisseau: Phil Graves. Welcome. Can you explain, as a Behavioural Psychologist, how behaviour can impact the way patients and healthcare professionals manage glaucoma, please?
Phil Graves: Hello Siân. Well, from a behavioural psychology perspective, which is really about understanding the processes that drive human behaviour and decision making, which means focusing on behaviour rather than what people say. We can look at the whole package of drivers, of how people end up making the decisions they do and how they end up, sometimes they're not even decisions, sometimes they just find themselves doing the things that they do, or they're the absence of the decision. When it comes to glaucoma, patient behaviours and also the wider public behaviour can contribute dramatically to what we ultimately see in terms of health outcomes. That’s not just because of the adherence to treatment – simply having regular eye tests is important, but something that often gets missed. Glaucoma is particularly challenging because it's a disease where patients don't experience any early symptoms. Healthcare professionals have that challenge of having to strike the balance between ensuring the patients understand the long term implications of something, which at that stage they may not even feel, but also clearly not terrifying people about some of the very problematic outcomes that can arise.
"Glaucoma is particularly challenging because it's a disease where patients don't experience any early symptoms. Healthcare professionals have that challenge of having to strike the balance between ensuring the patients understand the long term implications of something, which at that stage they may not even feel, but also clearly not terrifying people about some of the very problematic outcomes that can arise."
Phil Graves, Behavioural Psychologist
Siân Boisseau: Okay. Thank you, Phil. Carol Bronze, a Communication Specialist and glaucoma patient. Hello, Carol. Glaucoma is, of course, a chronic condition. Maybe you could tell us a little about the journey of receiving your glaucoma diagnosis and how your condition has impacted your day-to-day life?
Carol Bronze: Sure. First I'd like to say I'm really happy to be here, and hello everyone. The first time, I went into clinic, I didn't have any family history of glaucoma and I was very young. I was in my early thirties. It was a terrible shock. I had no idea what ‘intraocular pressure’ meant. No one had ever expressed that to me so it was confusing. And then having to juggle drops, appointments, work, family and keeping the disease a secret were absolutely huge. The physical and emotional strain were both tremendous. Actually, I felt very sad and lonely at the appointments because I had no one to connect with and there wasn't enough information available for people my age.
Siân Boisseau: Thanks, Carol. Finally, Ioana Grobeiu, Vice President of Medical Affairs at Santen. Hi there. Can you talk a little about the goal for World Glaucoma Week this year and why it's so important?
Ioana Grobeiu: Hello, everyone. I'm grateful to be here today with such a distinguished panel to discuss improving the wellbeing of glaucoma patients. As you mentioned in the introduction, Siân, the World Glaucoma Association goal this year is to alert every one of the importance of regular eye testing in order to detect glaucoma as early as possible. World Glaucoma Association is doing this by encouraging cross-sector collaborative activities. As a company specialised in ophthalmology, we at Santen are very proud to be part of this great initiative.
"The World Glaucoma Association goal this year is to alert every one of the importance of regular eye testing in order to detect glaucoma as early as possible. World Glaucoma Association is doing this by encouraging cross-sector collaborative activities. As a company specialised in ophthalmology, we at Santen are very proud to be part of this great initiative."
Dr Ioana Grobeiu, Medical Affairs, Santen EMEA
Siân Boisseau: Thanks Ioana. I'm going to talk a little bit now about the behavioural factors of the general public. Earlier detection is critical in good glaucoma management, but despite an ageing population, an ever-growing prevalence of glaucoma and advances in screening technology, patients are still presenting with advanced disease. A question for Professor Oddone, what are the clinical advantages in the early diagnosis?
Professor Oddone: Thank you Siân for this question. Actually, the timing of diagnosis significantly impacts the patient’s visual function. The later the diagnosis, the further glaucoma has progressed, causing irreversible blindness. Having earlier diagnosis is really critical to be able to start an appropriate treatment when the disease has not yet caused any symptomatic loss of vision. We are seeing a move towards early diagnosis, as people are becoming more aware that they need to take regular eye tests, which is positive to see, but more and more can definitely be done in this area.
"The timing of diagnosis significantly impacts the patient’s visual function. The later the diagnosis, the further glaucoma has progressed, causing irreversible blindness. Having earlier diagnosis is really critical to be able to start an appropriate treatment when the disease has not yet caused any symptomatic loss of vision."
Professor Francesco Oddone, Head of Glaucoma Unit, IRCCS Fondazione G.B.Bietti
Siân Boisseau: A question for Phil. Can you explain Phil, what might prevent people from getting their eyes tested, when of course they're screened as well?
Phil Graves: Well, it's probably a topic in and of itself that, but I'll focus in on four reasons, which I think are perhaps the most significant. The first is that simply people don't consider it – getting their eyes tested. A lot of human behaviour is characterised by us unconsciously filtering out things that feel unimportant. It doesn't even come up on our radar. And so the absence of awareness and consideration ends up being something in and of itself. It just doesn't cross people's minds. And the fact that it's not in their minds makes asking about it quite tricky because they almost never give the reason that they've not thought about something. They'll give some kind of justification or excuse. And secondly, and this is quite significant in a lot of human behaviour, we tend to focus on the short-term. There's this unconscious competition going on between the things that we know we should do and the things that either feel more important in the moment or more rewarding in the moment. And it's often what feels better or nicer or more convenient to do now that wins out. And that can mean that people push their eye test out into the distance and it ends up getting pushed back and back and back. And then you have a couple of empirical issues. So if you do something like have an eye test on several occasions and nothing untoward comes out of it – your prescription doesn't change or you don't need glasses at all – then the human tendency is just to generalise from that experience. And we have a kind of heuristic that saves us a lot of time. This isn't a very important thing because nothing happens. It's a bit like when you skip through terms and conditions on a website. Nothing bad happens to you as a result. And then there's the primary association that people have with an eye test, which is that it's about establishing the quality of our vision. And if we feel like we're managing to see okay with our current prescription or without glasses, then it's likely that our decision about whether or not to go and get our eyes tested is based on that single parameter, not the overall health of our eyes.
Siân Boisseau: Thank you, Phil. And now a question for Carol. As a patient, and you think back to your own diagnosis, how much do you feel you knew about glaucoma at the time?
Carol Bronze: I think what Professor Oddone has said is critical and it really resonates with me because if you're very young and you don't expect this diagnosis, how can you possibly be prepared for the news you're going to be given once you're in clinic? So I think more information. As Phil says, more information about good eye health and why it's important to get checked is really important for everyone. And if you walk into clinic and you are young, perhaps healthcare providers can deal with that person slightly differently than they would with someone who's older because if you're older, you think: "Well glaucoma is often thought of as an old person's disease. It's not associated with younger people.” If like me, you walk into clinic and you're in your early 30s, how can you possibly know what is going to come from that healthcare provider? You have no experience of it unless you happen to have a family member who has had glaucoma. Otherwise, nothing. None of your friends have it. None of your family. So I had no information. It was really shocking.
Siân Boisseau: Professor Oddone, what do you think the key problem is with eye testing?
Professor Oddone: Basically, I think the main problem is that for those people that, for example wear glasses or spectacles, I mean, they are more likely to in some way undergo an eye test at the optician or at the ophthalmologist clinic. But for all the vast majority of people that don't wear glasses – I mean provided that diseases such as glaucoma are not symptomatic so they don't cause problems – it's very unlikely that they will go to a regular eye test, unless they are in some way informed about the need of doing it regularly. And especially with increasing age. Glaucoma, as Carol just pointed out, can affect people at any age, but the prevalence is increasing with increasing age. So the need for having a regular eye test increases for more mature people. So I think that campaigns of information targeted to the appropriate audience can really improve the awareness and the needs for those regular eye tests.
Phil Graves: Well, yes. I mean, I think people's minds work by association. And there's a fairly strong association with the term eye test that is very much linked to acuity of sight. And I think perhaps if we could build the expression ‘an eye health screening’, which is perhaps a more accurate reflection of what happens when you have an eye checkup, people would perhaps have a more accurate understanding of what it is that's being done and also perhaps a different idea about how frequently they might want to do it. In other areas where we talk about health screening, it becomes quite an emotive issue if it's withdrawn or if it's reduced or if people feel they're not getting access to it. So perhaps a change in the name that we use for it would be helpful.
"There's a fairly strong association with the term eye test that is very much linked to acuity of sight. And I think perhaps if we could build the expression ‘an eye health screening’, which is perhaps a more accurate reflection of what happens when you have an eye checkup, people would perhaps have a more accurate understanding of what it is that's being done and also perhaps a different idea about how frequently they might want to do it."
Phil Graves, Behavioural Psychologist
Siân Boisseau: Question for you, Ioana. As Professor Oddone mentioned, regular eye tests or perhaps screenings are critical. What challenges do people face in accessing those screenings though?
Ioana Grobeiu: Unfortunately, as we all know, high quality eye health services are not universally delivered. Very sadly, 90% of those affected by vision impairment, including glaucoma, live in low-income and middle-income countries. Women, rural populations and ethnic minority groups are more likely to have vision impairment in particular. And these are the groups who are also less likely to access high quality, affordable eye care.4 What can we do to address these challenges right now? We are focusing a lot on awareness initiatives. We want, on one hand, to get closer to our patients and understand better their unmet needs so that we can address this. On the other hand, of course, we will work and stay closer to the experts in glaucoma so we can better grasp the gaps in the education that we can also address. But of course, this will not be enough because we need to think about sustainability. And in the long-term, we are looking to leverage telemedicine, artificial intelligence and mobile health in order to make this screening process more user-friendly and of course more affordable to a wide range of population. And definitely, we believe that these developments in the technology field will have the potential to revolutionise eye healthcare in the next decade. But as a society, we need to be careful and to make sure that all population could benefit from this development.
"In the long-term, we are looking to leverage telemedicine, artificial intelligence and mobile health in order to make this screening process more user-friendly and of course more affordable to a wide range of population."
Dr Ioana Grobeiu, Medical Affairs, Santen EMEA
Siân Boisseau: If we move now to the topic of importance of patient engagement and empowering the patient. We know that patient adherence to medication is really critical in effective management and it's well known that patients can struggle to maintain regular optimal treatment behaviours. Professor Oddone, can you explain why adherence to medication is such a challenge, particularly for glaucoma patients?
Professor Oddone: This is a very important question, Siân. Actually glaucoma requires single or multiple daily administrations of eye drops. This is to reduce the pressure of the eye – the so-called intraocular pressure – and prevent progression of the disease and vision loss. The challenge with glaucoma is that it is an asymptomatic condition until late stages and people don't feel better by taking their medication. But in fact, they are preventing visual impairment and ultimately blindness. And so communication and alliance with the patients is really critical to inform about the condition and the importance of taking regularly the medication, and in order ultimately to succeed together, physician and patients, to prevent visual loss.
Siân Boisseau: And how do you help patients to manage this in particular?
Professor Oddone: I think as I just mentioned, speaking with the patient – dialogue. The dialogue is fundamental. So I know that in routine clinical practice, there is a burden of activities that have to be done and the temptation is to run very fast and so spend very little time in speaking with the patients. Actually, this is not lost time, but is a real investment for the preservation of the quality of life for the patients. I mean, speaking with the patients really can make the difference, in terms of willingness to participate in the treatment by the patients. Actually, it must be sometimes difficult to understand for those who are not really affected by glaucoma. But really the challenge is to make the patient understand that most of the troubles – actually until late stages – come from the inconvenience of being monitored and the inconvenience of using drops, while glaucoma for a long time would not cause any trouble itself apparently. So if you really manage to make the patient understand that by doing these actions every day on a routine basis they are preventing visual loss, you really are making the difference.
Siân Boisseau: Phil, we worked recently together on a real life study of patient behaviours in glaucoma. Would you be able to give an overview of how that study was designed and what we found?
Phil Graves: Sure. Well, the study was looking at patient behaviour rather than patient attitudes. So what we do is we relive key experiences with them through their day with healthcare practitioner appointments, times when they've missed a dose – just looking at what it is they're doing. And then through our understanding of how people make decisions, the conscious and unconscious drivers of what's going on. And one of the things that came out of that study, if you were to look at it at the highest level, was just how important it is for healthcare practitioners to understand each patient's lifestyle. So that's things like how much routine do they already have in their life. If they have a lot of routine, it's quite often easier to integrate the taking of regular doses of eye medication. But if they don't, then that can be really challenging. If you're leading a busy and active life, a third dose in the middle of the day can get lost amongst the other things that are going on.5 If you travel often, you might end up not taking your drops with you. It is more likely to be relegated down a list of priorities. And also on the priorities point, what other medications are people are taking? Because often they may seem more important because they're linked to diseases that have notable symptoms, whereas glaucoma as we've heard often doesn't. And the life stage that someone's at. So if you are younger, female, in the morning you are probably thinking more about maybe applying makeup, part of the beauty routine than you are about putting drops in your eyes that make them red and detract from your aesthetic appeal. I hope that's not regarded as a sexist observation. But, as a Behavioural Psychologist, one can observe there is an awful lot of beauty behaviour that goes on and coupling is a part of the human existence. And then ultimately, we have to recognise that people aren't rational creatures. So clinical reasoning is one thing, but that won't determine what people ultimately do. It's really important for patients themselves to try and develop an understanding of what's realistic for them in terms of taking medication and to work with the healthcare practitioner, who should also be trying to understand the patient's lifestyle to come up with the best regimen for dealing with this condition over the long term. And from a patient point of view, there's likely, as there are with a lot of things in life, like dieting and exercise, an initial spike of enthusiasm and conscious attention, but then day-to-day life tends to get in the way. And so it's important for patients who are diagnosed to be honest with their healthcare practitioner about what they're doing with their doses when they are missing them, how they're finding scheduling multiple doses throughout a day. And for the healthcare practitioners to be very mindful of that information and to solicit it because it's really critical to how well people adhere to the treatment – that's so important to the long term outcome of their condition.
"One of the things that came out of that study, if you were to look at it at the highest level, was just how important it is for healthcare practitioners to understand each patient's lifestyle."
Phil Graves, Behavioural Psychologist
Siân Boisseau: Quite a complex situation, isn't it? And I wonder Ioana, does Santen have any other insights about challenges that patients face?
Ioana Grobeiu: Not surprisingly, patients are at the heart at everything we do at Santen. So listening to their real life stories and experiences is absolutely critical in order to be able to support patients. Unfortunately, the pandemic has only made things more challenging for glaucoma patients to be able to manage optimally their treatment. We conducted a survey of patients across Europe, which showed that during this time over 35% of glaucoma patients did not use their drops as prescribed. And pretty much the same percentage, over 35%, were unable to attend appointments with no alternatives offered online or on the phone.6 So, with all these additional challenges, it's clear that now more than ever, we must unite together and support glaucoma patients as they manage their chronic condition.
"Not surprisingly, patients are at the heart at everything we do at Santen. So listening to their real life stories and experiences is absolutely critical in order to be able to support patients."
Dr Ioana Grobeiu, Medical Affairs, Santen EMEA
Siân Boisseau: Thanks, Ioana. A recent review suggested that low understanding of health-related terms or what's termed ‘health literacy’ may hinder best practice management.7 And given the management of glaucoma depends so much on patient engagement and empowerment, low health literacy really poses a considerable health concern for us. Carol, we heard earlier about your knowledge at diagnosis. How did this impact how you took and adhered to your glaucoma treatment?
Carol Bronze: When I went into clinic, I felt I couldn't ask questions such as: What's the long term effect? How do I take eye drops? I really felt very foolish saying: “How do I take these eye drop?” And it was only after years of taking the drops that I realised I had to keep my finger over my tear duct to make sure that the drugs stayed in the system a little bit longer, didn't just run down the face. So actually, what the professor was saying exactly sums up what's important to me in clinic – that connection between the patient because it would make me take my drugs. It would make the taking of the drugs more meaningful. And then when Phil talked about makeup, it made me laugh because he was absolutely right about that. I only ever put my makeup on. I was going straight to work after clinic and I only put my makeup on after I had my examination because otherwise all the makeup would've just run down my face. So these two points are really important. Thinking very carefully about the patient as a whole, as a complete person, not just a pair of eyes that need to be administered to. Because if you do that, I as a patient, think who am I doing this for? I don't really understand this. This health literacy is extremely important. We don't know enough about it as patients. We don't understand the meaning of it. We don't understand whether a particular drug is going to help us or not. And it's only often after months of taking it that we can see that the IOP has gone down. We can't feel it. We don't know it. We don't go back to clinic for three months, six months, whatever. So there's no understanding from our perspective. And I think that's sometimes the reason why patients just stop taking it because they cannot see. It's unlike a lot of other drugs. You cannot see the benefit of taking it on a day-to-day basis. It's only when you go back to clinic after months of doing this and the clinician, the healthcare professional, says to you: "That's great. Your IOP has gone down." And you think, wonderful, all of that work was worth it. So that's why that relationship – that when the professor was talking about – that relationship between the clinician, between the healthcare provider and the patient is critical. Absolutely critical to patients taking and adhering to the administering of the medicine.
Siân Boisseau: And how's your knowledge changed over time? Do you behave differently now in your appointments?
Carol Bronze: Completely. Because I go into a clinic now and I have questions ready. I think about my questions before I go into clinic. I assess over several weeks, what's been bothering me? Does a particular drug hurt my eyes or do my eyes feel worse in the afternoon than they do in the morning? So I collect my questions and I might put them on my phone or I might write a note or something like that. And then when I go into clinic and I've got my list in front of me, then I'll say to the clinician, what about this and what about that? And what about the other thing? And it's scary for a patient to go into clinic. I force myself to be as calm as possible when I go in. I force myself to breathe deeply and think to myself, it's not only going to be bad news, there'll be good news. And I ask about new treatments or new drugs. I know there are always drugs in development and I want to know about that. Because even if it can't help me today, it might help me in six months’ time. And this is the positive side to it. This is what will help patients in the long term, because they'll realise that actually someone else is working on their behalf constantly. Someone is thinking about it and developing, and it might not be today, but it will be tomorrow and that might be the thing that will save my sight.
Siân Boisseau: A question for Professor Oddone, what is it for you as a physician, what's it like caring for a patient that has very good understanding versus someone who doesn't?
Professor Oddone: Of course there is a wide variability of behaviour among people and among those who are well informed, as well as among those who are not. Having said that, I strongly believe that good knowledge about glaucoma and about the importance of the therapy is really critical for the overall success of the therapeutic efforts. That both the patients and the physicians and the healthcare professionals in general, which is ultimately aimed at preserving the visual function and the related quality of life of the patients. This is mainly because having the inconvenience of administering the drops every day with their potential side effects, by having basically no symptoms from the disease until end stage, as we mentioned before, it is likely to make the patients lose motivation in continuing the treatment. So again, as Carol pointed out, it is really important to tailor the communication and the treatment choices to the individual patients you're facing.
Siân Boisseau: Physicians are obviously critical in the effective management of glaucoma and they share their deep knowledge of the therapy area and provide patients with the advice they need to manage the condition to the best effect. Behaviours are, of course, central though. A question for Carol, what do you need from your healthcare professional to help you manage your condition effectively?
Carol Bronze: I love this question because I think it's absolutely critical to the success of a patient taking it. When I go into clinic, I need the healthcare professional to make me feel as if I am important to them. I want them to listen to me. I want them to look at me. Here's a real trick, if they're looking at the screen the whole time and they're not looking at me, they're not making eye contact with me, I am just a number to them. As the professor said before, the clock is ticking, they're on a time thing, they have a waiting room full of patients. They've got to get people in. They've got to get people out. I'm not important to them. And so that makes me feel very diminished. It makes me feel insignificant. And it makes me think to myself, we're supposed to be in this together, but actually you are making me do this on my own. So I really want the healthcare professional to look at me. Turn the chair. It's a simple thing. Turn the chair away from the screen and turn the chair so that they are actually facing me, they're looking at me and they're speaking to me and listening to me. And they're saying to me: "How are you getting on with your drops? How are you getting on with everything? Has it affected your life?" Phil talked about that before. He's said we've got a lot of other challenges. Of course, we have other challenges, but that doesn't mean we can't build taking eye drops into a normal routine as much as we brush our teeth or wash our face or set the alarm for the next morning. We can do all of this, but it needs to be something that we feel that we're doing with someone who really understands why we're doing it. Our knowledge only goes so far. Even someone who is very up on glaucoma, really understands glaucoma. We still – I still – have tons of questions when I go into clinic. There are so many things I don't understand. I don't think I'll ever understand. I'm not a medical person. I'm just one patient who has only had my lifetime of experiences. So I need that healthcare professional to think I'm important and I'm worth listening to. And as the professor said, tailor. If that particular medicine isn't working for me, let's change it. If you have red itchy eyes, if you go into work the next day and everybody says to you: "She was on the drink last night because her eyes are all red and obviously she's been out the night before." They don't realise that it's a side effect and I'm not about to tell of them because I'm trying to keep this quiet. I don't want my office to know that I have glaucoma. It's a secret. So I need my healthcare professional to work with me and say: "Looks like your eyes are red. Perhaps we can try something that doesn't have preservatives in it and maybe that will help and mitigate the redness." So I need that one-to-one contact. I need them to think about me and make me feel important. And then I will do everything the healthcare professional asks me to do.
"When I go into clinic, I need the healthcare professional to make me feel as if I am important to them. I want them to listen to me. I want them to look at me."
Carol Bronze, glaucoma patient
Siân Boisseau: Changes to medication are really important as you mentioned, Carol. Professor Oddone can you explain why you might have to change a glaucoma medication for patient?
Professor Oddone: Yes, of course. We have to consider that glaucoma is a lifelong journey and so is its treatment. And that might require changes over time, actually. So reasons why we change medication from time-to-time include changes required by elevated intraocular pressure that would otherwise lead to a worsening of the visual function over time or evidence of worsening of the visual function despite an apparently good control of the intraocular pressure. And last but not least, patient preferences due to side effects or inconvenience related to the number or timings of the prescribed daily administrations. And so a change is required to provide more effective, well tolerated and more tailored on the individual's lifestyle treatments.
Siân Boisseau: So it seems that patients probably need to change medication occasionally, if not regularly. Carol, have you experienced personal challenges with adhering to a new medication? If so, what are the reasons for that?
Carol Bronze: Most of the time, the problems with taking a new medication stem from the side effects or the frequency. Phil mentioned this before. If you are asked to take a medication three times a day, it's almost impossible to fit that into your routine, if you are still of a working age, because you just forget in the middle of the day. I just can't. I can do it morning and evening, but I just can't do it in the middle of the day. So that's not the right response for a patient who’s younger and is still within their working life. And the side effects are very difficult. And there's a huge amount of work to be done on the psychological effect on patients, because when you have side effects, it's very difficult to keep telling even a loving family that your eyes are itchy. They're dry, they feel terrible. Sometimes at the end of the day, you don't even think you can see anymore. You can't keep going on about that. So what is causing that is the drug. And if you stop taking the drug, maybe you wouldn't have that effect. So it's a very fine line between, I know this is doing me the power of good, but I just can't get on with it. And I'm not going back to clinic for six months. What do I do about that? So that's a real challenge.
Siân Boisseau: Thanks, Carol. It's obviously quite bespoke, what's needed to manage glaucoma. Ioana, how is Santen supporting healthcare professionals in tackling glaucoma and the nature of needing to tailor it for the patient?
Ioana Grobeiu: Listening to both Professor Oddone and Carol, it's clear that there is not only that glaucoma is a lifelong journey, but also the patient needs are so diverse. So we at Santen are committed to support the glaucoma experts in providing and shaping this individualised treatment, which will allow to get better and better treatment outcomes, and to continuously improve the patient's quality of life.
"So we at Santen are committed to support the glaucoma experts in providing and shaping this individualised treatment, which will allow to get better and better treatment outcomes, and to continuously improve the patient's quality of life."
Dr Ioana Grobeiu, Medical Affairs, Santen EMEA
Siân Boisseau: So just one final point, maybe from Carol, as we mark World Glaucoma Week of course, for patients and to improve awareness and understanding, what would be the final piece of advice you'd give to glaucoma patients?
Carol Bronze: Great question. I would say you're not alone. We all feel the same. Working through glaucoma is a shared experience. Definitely think of your questions before you go and see your healthcare professional, whatever is troubling you. You may think it's trivial. It's not. Just ask them: “Why do my eyes feel so itchy at the end of the day and not at the beginning of the day?” Talk to them about it. And find a path that suits you. Find something that works for you and is the best way for you to adhere to taking your drops, because that is the only way you're going to save your sight.
"Working through glaucoma is a shared experience. Definitely think of your questions before you go and see your healthcare professional, whatever is troubling you. You may think it's trivial. It's not."
Carol Bronze, glaucoma patient
Siân Boisseau: Thanks Carol. Thank you for listening. And of course, thank you to Carol, Professor Oddone, Phil and Ioana for sharing your thoughts and experiences. Stay tuned on Santen EMEA’s Twitter and LinkedIn channels for updates on the next ‘All Eyes On’ podcast and check out other episodes on our website, santen.eu. Thanks again for joining us and we look forward to exploring more hot topics in ophthalmology very soon.
References
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- Data on file. Real Life Efficacy study data (2020)
- Data on file. COVID-19 patient survey data (2020)
- Mackey LM., et al. Self-Management Skills in Chronic Disease Management: What Role Does Health Literacy Have? (2016). Society for Medical Decision Making, 36;6