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Sjögren’s syndrome is an autoimmune disease and a leading cause of moderate-to-severe aqueous-deficient dry eye disease (DED). Characterised by reduced levels of tear production, Sjögren’s patients often perceive DED as a disability rather than a source of discomfort.1

In the latest episode of All Eyes On, we marked World Sjögren’s Day (23 July 2021) by sitting down with a Sjögren's syndrome patient and experts in the field to discuss how the journey to a DED diagnosis can significantly impact the lives of those with and without Sjögren’s. Focusing on the patient perspective, the episode will explore the factors affecting this pathway and what action is needed to support DED sufferers by looking at newly published real-world survey data.

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You can also read or hear (by enabling the screen reader) the full discussion below:

Alice Grosjean: Our disease is often misunderstood and overlooked. Our difficulties and the impact on our quality of life are not acknowledged enough.

Professor Francisco Figueiredo: The impact on the delay of being diagnosed is quite significant. The impact on health. The quality of life for these patients is quite remarkable.

Siân Boisseau: Welcome to All Eyes On, a podcast bringing the latest expert views about ophthalmology and eye health on topics influencing ophthalmology today and tomorrow. For our second episode, we're marking World Sjögren's Day on 23rd of July, which aims to raise awareness of Sjögren's syndrome, a systemic autoimmune disease that can be debilitating and distressing for the sufferer. This is an inflammatory condition that particularly affects secretory glands around the body often resulting in dry, itchy, irritated eyes and dry mouth along with disabling fatigue and muscle aches.2 Ninety percent of patients are female and Sjögren's typically develops in women in their thirties to sixties, although it can occur at any age and can affect both men and women. It can occur alongside other autoimmune conditions, such as lupus and rheumatoid arthritis, and in countries such as the UK and France cases are estimated to number around 30,000.1,2 Today we're going to discuss the current unmet needs of the patient with Sjögren's syndrome with a focus on recently published real-world survey of the patient's experience of dry eye disease and the considerable and at largely underappreciated impact on their quality of life. I'm Siân Boisseau, Head of Communications at Santen for Europe, Middle East and Africa region. I'm delighted to be here today and joined by firstly Alice Grosjean who is a Sjögren's syndrome sufferer, President of Sjögren Europe, as well as the Swiss French association for Sjögren's syndrome in Switzerland. Hello Alice.

Alice Grosjean: Hello everybody.

Siân Boisseau: And Professor Francisco Figueiredo, Consultant Ophthalmologist in Newcastle in the UK. Hello Professor Figueiredo.

Professor Francisco Figueiredo: Hello Siân. Nice to see you again.

Siân Boisseau: And you too. Finally, Jean-Sébastien Garrigue, Vice President of Research and Development for Santen in Europe, Middle East and Africa. Hello, Jean-Sébastien.

Jean-Sébastien Garrigue: Hi everyone. Thank you for the invitation, Siân. I'm delighted to exchange with you today with you Alice and Francisco on such an important topic for patients.

Siân Boisseau: It's great to have the opportunity to discuss this disease and bring new insights to members of the ophthalmology community and we hope the broader general public. There's many symptoms that can affect quality and enjoyment of life and dry eye is just one of them. As a company dedicated to helping people with eye conditions, we want to particularly focus on this aspect of Sjögren's syndrome today. A question for Alice: As president of two associations for Sjögren's syndrome and someone who's suffered with the syndrome yourself, can you please tell us about the condition and why a better understanding and awareness of it is so important?

Alice Grosjean: Our disease is often misunderstood and overlooked. Our difficulties and the impact on our quality of life are not acknowledged enough. As emblematic symptoms of Sjögren's, dry eyes and dry mouth are a major challenge for us patients and also for health professionals. And the symptoms can truly be dissembling symptoms and no we can't treat these symptoms or Sjögren's with a glass of water and some few basic eye drops. Also Sjögren's is so much more than dry eyes and dry mouth. It can affect the whole body. It is a serious systemic disease with some symptoms like pain, fatigue and even organ complications. It is complex. It has a heterogeneous nature. It is a chameleon disease and it is therefore difficult to diagnose. Last but not least, treatments are mainly symptomatic and they are often not effective enough and not specific enough.

"Sjögren's is so much more than dry eyes and dry mouth. It can affect the whole body. It is a serious systemic disease with some symptoms like pain, fatigue and even organ complications."  
Alice Grosjean, Sjögren's syndrome patient and President of Sjögren Europe and the Swiss-French Association for Sjögren's syndrome, Switzerland

Siân Boisseau: It sounds quite distressing. We particularly know that the dry eye symptoms are an important aspect of Sjögren's syndrome and that can have a very negative impact on someone's life. Coming to you, Professor Figueiredo: You conducted some research into the experience of people in getting a diagnosis, both those with and without Sjögren's syndrome. Can you tell us a little about the rationale for that work?

Professor Francisco Figueiredo: Well, it's exactly why the rationale behind this project was, as like Alice highlighted, the patient's experience with Sjögren's syndrome is quite difficult. In dry eye in general we want to understand exactly the experience that the patient suffers before they are diagnosed, before they are treated. And we know extremely well that the earlier diagnosed, the earlier you can start the treatment, the management becomes much more effective. And again, I highlight the need for not just the healthcare professionals, but also the patients and the health service to be able to understand how the disease works and try to offer a better service for the patients.

"We know extremely well that the earlier diagnosed, the earlier you can start the treatment, the management becomes much more effective." 
Professor Francisco Figueiredo, Consultant Ophthalmologist, United Kingdom

Siân Boisseau: Thank you and Jean-Sébastien, you were also an author of the study. Why did Santen feel this was a topic that we should understand more?

Jean-Sébastien Garrigue: Yes. Thank you, Siân. Sure. We are aiming at hearing such a powerful voice from the patients. Listening and collecting valuable insights from dry eye patients with, and without Sjögren's syndrome in this programme in order to help inform our developments, highlight the burden of the disease to the ecosystem, including the payers and the regulators, but also drive attention on unmet medical needs and possibly medical gaps in management of the disease. So, we collaborated with top European experts of dry eye, such like Professor Francisco Figueiredo. We worked with Sjögren patient associations in various countries to design the questionnaire and conduct the survey and this exercise was very insightful and rich, I must say. It led to three peer review publications and an uncovering of important improvement areas. It helped us a lot to better understand the impact of the disease on quality of life from both the qualitative and quantitative point of view. Importantly, I was myself struck to see the proportion of patients who would wake up at night because of dry eye resulting in poor sleep quality. We also learned, for example, about what the most important self-reported symptoms are. One was itching. What may be misleading if you think about it is some healthcare professionals may think of allergy instead of dry eye when hearing about pruritus. We also observed a very high proportion of patients suffering from photophobia and the need for sunglasses to cope with light. So dry eye is not only about stinging and dry sensations, right? And at the end of the day, a better understanding of the condition would help us refine the tools and instruments that we should use in the pharma industry to collect relevant patient reported outcomes. We are also seriously looking at other ways to measure the treatments benefits for patients, such like the impact on quality of vision, blurred vision, ability to read as a leisure activity and so on. 

"A better understanding of the condition would help us refine the tools and instruments that we should use in the pharma industry to collect relevant patient reported outcomes. We are also seriously looking at other ways to measure the treatments benefits for patients, such like the impact on quality of vision, blurred vision, ability to read as a leisure activity and so on." 
Jean-Sébastien Garrigue, Vice President, Research and Development, Santen EMEA

Siân Boisseau: Thank you. Fantastic context, thank you all. It's clear that raising awareness and appreciation of that profound impact upon the sufferer is really important. Coming back to you, Professor Figueiredo: Can you tell us a little more about the main findings please, about the study, particularly regarding receiving a diagnosis and how the time taken can really impact the patient?

Professor Francisco Figueiredo: Yeah, I mean, thank you very much, Siân. One of the critical things was the difference that it takes in terms of time for patients to be diagnosed with dry eyes. A patient with dry eye, without any systemic disease, tend to be diagnosed much earlier. It usually takes less than a year to be diagnosed. And then it’s completely different for patients with Sjögren's disease – it takes much longer on an average of like three years for them to be diagnosed. And the other thing that we observed on our side is that often patients with Sjögren's disease tend to see quite a lot of healthcare professionals before they are diagnosed with dry eye compared with non-Sjögren's disease. They had to see at least four healthcare professionals before they were diagnosed with dry eye. And you can imagine the suffering of these people, who suffered dry eyes, and nobody understands what's going on. I mean, it's amazing when you talk to patients and then not even the family, nobody at work. I mean, I have a patient yesterday that phoned me saying that they make jokes at work because she's put in dry eye drops, you see. But, the impact on the delay of being diagnosed is quite significant. The impact on the health. The quality of life for these patients is quite remarkable and this is statistically significant. And that's why it's so important that we increase the awareness of the disease itself, increase the awareness from the public point of view and educational point of view in a way that we can facilitate the process and you have an obligation. That's why I set up a dry eye clinic more than 20 years ago because I think we feel very strongly that we have facilitated processes for the patient to have access to the healthcare service early enough. Because as we know, it's a very complex disease, multifactorial, and it's several things involved, including inflammations of the eye. The inflammation is detrimental to the surface of the eye and it would cause some harm and obviously the earlier you start treating the patient, the better for the patient, but we can only treat the patient if we diagnose the patient. One of the things that highlights this study is the differences in healthcare systems in comparing France to Spain and to Italy. We have to be very versatile, very customised as everybody's different. And I think from this study, we're very hopeful that this will help increase this awareness in the community, scientific community and what you are doing today is exactly for the public, for the patients as well. 

"Often patients with Sjögren's disease tend to see quite a lot of healthcare professionals before they are diagnosed with dry eye compared with non-Sjögren's disease." 
Professor Francisco Figueiredo, Consultant Ophthalmologist, United Kingdom

Siân Boisseau: Alice, what would be your perspective on the study results and as someone with the condition, can you share a bit about your experience of the diagnosis of dry eye?

Alice Grosjean: So the findings sound very representative of what patients go through. I listen a lot to patient experiences in Switzerland and in Europe and they also tell me about the lack of understanding by family, friends, health professionals and the difficulty to be taken seriously and to get a diagnosis. For example, I went to my first ophthalmologist when I was 16 because my eyes were burning and I didn't understand, I was not understanding, why at that moment I was not being taken seriously. I was told that it was the plague of the modern times. So I didn't know what to do and so I went to another ophthalmologist who was much more curious and tried to understand, to find the solutions for me and I felt supported. It makes a big difference to feel supported and my experience is not unique. And at the time I got my diagnosis of Sjögren's and also dry eyes, I was studying computer science. So, I had to stop my studies because staring in front of a screen was not possible for me anymore. And so dry eyes can have a big impact on our daily life, yeah. 

Siân Boisseau: Thanks for sharing that experience, sounds quite you know, life-changing. Just coming back to you Professor Figueiredo: You mentioned about the studies and considering people in France, Spain and Italy, what kind of country specific variations were there in receiving a diagnosis?

Professor Francisco Figueiredo: There is a quite a big discrepancy between countries in terms of healthcare system. One of the questions that we asked patients was how they perceived the disease, for example if they perceived their disease as simple, like a discomfort, if they perceived their disease as a disease itself, or if they perceived the dry eye as a handicap. And it was very interesting that for example, in Spain, most of the patients perceived the dry eye as a disease. While in France a great proportion of patients perceived this as a handicap. And then the patient access to service for example, you are more likely to be diagnosed in France by an ophthalmologist with a dry eye, but in Italy, for example, you're more likely to be diagnosed with a dry eye by a rheumatologist. And then in Spain, you are equally diagnosed between an ophthalmologist and a rheumatologist. And then all this kind of difference, the management is different as well. There was not the homogeneous system and obviously this, like I said before, has a huge impact on patients’ quality of life. There is still a long way to go and the more things that we do, like what we're doing now to try to increase awareness, will be extremely beneficial for patients. The experience for patients, like I sympathise what you're saying, it's unbelievable how, it's amazing how patients get a huge comfort just to be diagnosed with the condition. It's a big relief for the patients. It's quite difficult when they go to a doctor who don't understand dry eye and they cannot help the patient. And it's frustrating for them, instead of helping them, they make the situation even worse.

Siân Boisseau: And back to you, Alice: In your role as President of Sjögren Europe. Do you see a difference between countries and how might patient advocacy activity improve that? 

Alice Grosjean: So, yes, there are big differences in healthcare systems between countries. For example, some eye drops are available in one country and some are not in another one, same for treatments. And often eye drops are not reimbursed by health insurance in some countries. So it's a big financial burden for patients because we use them a lot daily. It can be up to 20 times a day or even more sometimes, so it's very expensive. And yes, in some countries, yes dry eyes are taken seriously. In some other countries, not at all because it's not serious enough, it's not life threatening. So it's not a big deal for some doctors in some countries. So it's an additional burden for the patient and in terms of advocacy, yes, we do awareness. For example, one of our board members testified about the difference between countries in terms of treatments availability or reimbursement before members of the European parliament. 

Siân Boisseau: Great, thank you. So again, to you, Alice: From the study results we're clearly seeing that it's very worrying that it can be expressed as a disability for people who have Sjögren's. The dry eye is really quite distressing. There's no patient advocacy groups that are dedicated to that alone. What impact does this have on patients, do you think? And do you have to support through the Sjögren's organisations, people with dry eye, but not necessarily with Sjögren's?

Alice Grosjean: Yes, of course. Many, many patients with dry eyes contact us at Sjögren Europe or they contact the national patient association because we have a lot of experience with dry eyes. So they ask us for support or to offer advice or to share some experiences, or just because they want to be understood. 

Siân Boisseau: And Professor Figueiredo: From your experience, how could we all work together more ophthalmologists, patient associations and industry to help improve the lives of people with dry eye disease, whether they have Sjögren's syndrome or not? 

Professor Francisco Figueiredo: Like we have been discussing here, I think the patient, the increased awareness of the disease improves the education that people understand. I mean, it's like I explain to patients, we have a set of medications that we think is going to work for them, based on the quality of the medication, the way the properties of the medication, like for example, we know the ocular surface is very inflamed and that's why the patient has lots of symptoms. And then obviously you think that the steroid treatment is one of the things that will help, then immunomodulators are going to help the eye. But then when you put the medication in the eye, the medication may sting, the medication may not necessarily have the immediate benefit the patient expects. Then there is a lot of understanding and a lot of education that you need to do with the patient. And I want to say that I spend more time talking to the patient than really examining the patient themselves because the best way for me is to make the patient help themselves. If you try to educate the patient, try to make them aware of the problems that way they can deal with that better. And then, we need to focus on the patient, try to facilitate the process for them to have access to a whole service, for them to have access to treatment, for them to have more support from the family, extremely more support from work place as well. Like I said, this person that informed me yesterday, who has been ridiculed at work because she puts drops in the eye and she can't live then. As you know, there are a lot of patients that go to work on a daily basis that suffer with dry eye and their productivity cannot be the same as somebody else who doesn't have dry eye. And then, like for example, I spend a lot of time explaining to people if you are working now with COVID and if you are spending a lot of your time in front of a computer. And a lot of people think that when they have a break, they go out of the computer, go to smartphone. Then in fact, you're not, you're leaving from one screen time to another screen time. And I have to explain to them that although life has changed a lot, we can't socialise as much as we could before, then we have to interact with friends and families through smartphones, social media, but the eyes are suffering. And like you said, collaboration, because we cannot treat the patient by ourselves. We have to interact with the GPs. We have to interact with rheumatologists. We have to interact with employers. We have to interact with the family. Then you have to work together as a team to be able to help the patients. 

"There are a lot of patients that go to work on a daily basis that suffer with dry eye and their productivity cannot be the same as somebody else who doesn't have dry eye."
Professor Francisco Figueiredo, Consultant Ophthalmologist, United Kingdom

Siân Boisseau: And back to you Jean-Sébastien: Do you have any examples of what Santen has learnt from working with patients and obtaining these kinds of patient insights that we're hearing from Alice and Professor Figueiredo? 

Jean-Sébastien Garrigue: Well Siân, we learnt a lot on many fronts I must say, recognising that everything starts with what we learn from patients and no one better than the patients themselves to explain the burden of their condition, their disease journey, and their hopes and expectations. A patient survey, as we did, is one approach to collect large and robust patient feedback and compliment the expert views. And with these invaluable insights, we are able now to tailor our approach to clinical development, allowing us to develop new treatments and we offer more relevant tools and services that would make a difference in patients’ lives. As you know at Santen, our vision is to bring happiness to people through the best vision experience. And in order to fulfill this mission, we have a great focus on patient experience being the basis of our work and always working to better understand the unmet patient needs. We are really humbled to work with patients and inspired by people like Alice. 

"Everything starts with what we learn from patients and no one better than the patients themselves to explain the burden of their condition, their disease journey, and their hopes and expectations." 
Jean-Sébastien Garrigue, Vice President, Research and Development, Santen EMEA

Siân Boisseau: Thank you. So, if we look to what we can do in the future, there’s lots of efforts already, but still lots of gaps obviously and more to be done to support people with dry eye and with Sjögren's syndrome. So Alice, what are you planning for World Sjögren's Day this time? And what do you think will have the biggest impact on patients?

Alice Grosjean: So this year we focused on fatigue, which is a big issue for patients. It's one of the major complaints of patients with Sjögrens. So, we already have hosted a webinar with a rheumatologist from Newcastle as well about fatigue. And we have created a leaflet, which will be published on the big day. We made it with a psychologist who is a specialist on fatigue with people with rheumatic conditions. And also we started two days ago, a campaign about fatigue on social media for patients to raise awareness about fatigue. And every day we publish short information with visual pictures in 12 languages, 12 European languages, to raise awareness. And the impact that we want mainly for patients is for fatigue to be acknowledged and to show them that, yes, it is true. And to show to their family and friends that, yes this fatigue is really here. It's really true. And yes, it has a big impact on the quality of life. 

Siân Boisseau: Well I think we wish you all the success with the campaign, sounds really powerful. Just back to you, Professor Figueiredo before we finish: Is there any further advice you have about how the diagnostic pathway could be improved for people with dry eye? 

Professor Francisco Figueiredo: Yes. I mean, one of the things that we've been developing over the last few months in Newcastle has been delayed slightly because of COVID, but is exactly to try to facilitate the process for patients to have access to a diagnosis or potential diagnosis of dry eye in the community. In a way that they don't necessarily need to come all the way to the tertiary services, the hospital, to be diagnosed with dry eye. The longer the times for the patient to be diagnosed, the more suffering and the high impact on the quality of life. We need to try to bring awareness and assessment and access to the patients in their primary care, as much as we can. Then we need to increase awareness in the GP practice and the local pharmacist because a lot of patients initially the first point of contact is to go to a pharmacy and go ahead and try to get help. And then this would be the easiest way to go. Going back to the same problem, again, awareness and education at all levels is very, very important. You know then you have to have a specific protocol and then what we're trying to design here about this pathway referrals is from the primary care to the secondary care to the tertiary care and back as well. You know they don't want patients to come to the hospital and be stuck in the hospital forever because it’s not good for the patient. The patient doesn't necessarily like to come to hospital for a treatment with dry eye. Then if it can devolve this patient back to the community, back to the optician, local optician plus GPs to manage the dry eye is best. Then you have to set up quite a comprehensive system in a way that's going to be very good for the patients really. And that's what we try to do. 

Siân Boisseau: Great, thank you all for your various insights today, really interesting and I think there's a big job to do still and Santen will definitely support in that. I hope the podcast will help increase people's appreciation of the disease, including those with Sjögren's syndrome and just how difficult and distressing it can be to navigate that complex care pathway as the symptoms worsen and they have such a profound impact on patients’ lives. Thank you for listening and of course to Alice Grosjean, Professor Figueiredo and Jean-Sébastien Garrigue for sharing their thoughts and experiences. Stay tuned on Santen EMEA's Twitter and LinkedIn channels for updates on the next All Eyes On. Thanks again for joining us and I look forward to exploring more hot topics in ophthalmology very soon.
 

Reference

  1. Figueiredo FC et al. 2021 Ophthalmol Ther. 10(2):321-335
  2. British Sjögren's Syndrome Association. Sjögren's syndrome information sheet. https://www.bssa.uk.net/pdfs/information-sheet.pdf (last accessed: July 2021)