This website was commissioned and funded by Santen.
The Future of Glaucoma
A clear vision for a better tomorrow: The Future of Glaucoma can be brighter
People with glaucoma need clarity about their condition
Patients with glaucoma who are educated about their diagnosis are more likely to actively engage in their care and often have better outcomes, finds Michael Marshall
This article was commissioned and funded by Santen.
Edited by Gus Gazzard & Joanne Creighton
It is well-established that patient education and engagement are fundamental to the effective management of health conditions. Glaucoma is no different. Patients are best placed to avoid sight loss if they have a good understanding of their condition and a sense of agency about their care. However, this is difficult to achieve in practice.1 In this article we explore what it means for people with glaucoma to be educated and engaged, the challenges of the current system, and how to improve it.
What does effective education and engagement look like?
The key goal of patient education in glaucoma is an understanding of the disease at a level appropriate to the individual. The aim is to equip patients with the knowledge they need to manage their condition.1 This includes an understanding of:
- The asymptomatic onset and progressive nature of glaucoma.
- Individual risk factors for (further) sight loss, such as family history, ethnicity and age.
- The patient’s personal risk/ prognosis, based on severity at the point of diagnosis.
- The various treatment options available, including how to adhere to any treatment prescribed, and how lifestyle modifications may support eye health.2
Education is also a prerequisite for effective engagement. Patients who actively participate in their care are likely to experience better outcomes through increased ownership of their treatment process.3 Engaged patients are more likely to attend appointments; adhere to their treatment regime; take responsibility for helping to monitor disease progression; speak up when they perceive a problem; and collaborate with healthcare professionals to make informed decisions about their treatment options.4,5
The benefits of patient education and engagement are clear. So why do some people with glaucoma frequently report feeling ill-informed and disconnected from their care?6,7
The understanding gap
The qualitative interviews with people with glaucoma conducted for this project, combined with insights from Glaucoma UK’s helpline, reveal four major challenges:
- Low awareness of glaucoma among the general population. Many associate it vaguely with ageing or family history, knowing little beyond “maybe granny got it,” says Nishani Amerasinghe at University Hospital Southampton. Because case-finding in the UK is limited to opportunistic detection at an optometrist’s, glaucoma is not a part of the national conversation, so people are not motivated to seek even basic information about it and importantly often fail to share information within families. Often people first learn about glaucoma at diagnosis, when they are faced with a large volume of technical material and commonly discover only later that they have a family history.8
- The complex nature of glaucoma. The details of glaucoma are technical, and the information given to patients often feels jargon-heavy and fragmented – especially for patients for whom English is not their first language. Such complexity frequently leads to confusion and misinformation.8 A Glaucoma UK helpline advisor explained: “We are often quite shocked by how badly a patient has misunderstood what they were told during their clinic appointment. Sometimes that has serious consequences, such as long periods without taking vital drops.”
- Patients’ strong emotional response to diagnosis. People with glaucoma interviewed for this project used words like “confused”, “terrifying” and “dumbstruck” to describe their initial response.8 This limits their ability to take in and process vital information. If clinicians don’t let patients process these feelings, and simply plough on with details of next steps, patients don’t properly absorb the information. Once the appointment is over, there is no easy way back to ask clarifying questions.
- The time-sensitive nature of consultations. This is probably the greatest barrier to patient education. Healthcare professionals have limited time to provide thorough, personalised explanations that address each patient’s concerns. While People with glaucoma agreed professionals were doing their best, they said there was not enough time for information-sharing at appointments – so they missed basic information. “There was just a big assumption that I knew what glaucoma was, I knew what it was all about, I knew how it was going to progress and what was going to happen.”8
The good news is that there are some easy wins that would help address these challenges.
Fixing glaucoma education
Health professionals could make an immediate difference by remembering the vital importance of the first appointment. By taking account of the impact of fear and anxiety on patients’ ability to hear and digest technical information,10 they can improve the quality of communication. Clinicians must first engage with and understand the patient, before trying to convey technical details like test results or how to take eye drops.11 “You’ve really got to spend time speaking with people,” says Michael Smith at Exeter Eye Hospital.
Of course, this is easier said than done in a busy glaucoma clinic or primary care setting. It is unrealistic to offer an individualised glaucoma education during a 20-minute appointment.12
But there is an answer. Clinicians can signpost all newly diagnosed patients to reliable sources of information, such as that provided by Glaucoma UK or other vision charities. This will ensure they receive accurate, evidence-based guidance in a way that is convenient to them: whether through accredited written materials, support groups, online webinars or helpline services. Currently, healthcare professionals often don’t do this. “Many of the people who reach out to us have found the charity by searching around on the internet,” explains Glaucoma UK’s helpline team. “We really worry about the many fearful and confused people who don’t find us.” Such referrals should become an automatic part of every glaucoma diagnosis, and at each key stage of the treatment pathway.
Looking ahead, technologies like AI chatbots for basic queries have potential. A wider range of always-on, high-quality digital tools would be valuable for those who feel uncomfortable seeking face-to-face advice, or who need information in other languages.13
At a national level, investing in awareness-raising would help build a public understanding of glaucoma risks and management. This is important for underserved audiences at high risk of sight loss, such as those of African, Caribbean or Asian descent, and those from socially disadvantaged backgrounds. Charities like Glaucoma UK already run targeted awareness campaigns, but with the help of statutory funding could scale up this existing infrastructure and share messages even more widely. Wider awareness would encourage high-risk individuals to seek regular eye health checks – enabling earlier diagnosis and reducing sight loss – and assuage the shock people experience when diagnosed, as well as potentially saving the wider system money.1,14
Barriers to patient engagement
Even once people with glaucoma are routinely well-informed, there remain some significant practical obstacles before they can be fully engaged:
- Patients often can’t interpret medical information and initiate action when necessary. Glaucoma clinical data such as optical coherence tomography (OCT) scans and visual field test results can be unfathomable to patients. Moreover, in the UK it is rare for clinicians to have access to systems by which such data can be shared with patients, or the time to help them understand the tests. Patients who cannot understand their disease will be less engaged, risking poor adherence to medication regimens, missed appointments, and ultimately vision loss.1
- Glaucoma care pathways are disjointed. Fragmented healthcare systems frequently lead to inconsistent records, duplicated testing and differing interpretations of test results. This means individuals can struggle to track the progress of their disease.8 They may find it harder to build trusting relationships with care professionals and self-advocate – so clinicians dominate decision making and leave patients feeling excluded from treatment planning.2 This is of particular concern for patients from underserved communities, who are already more likely to feel intimidated and disenfranchised by the health care system.15
- Care providers often give patients limited information. This is often for fear of causing alarm, or due to time constraints. But it is a frequent cause of frustration for patients who want a more active role. In particular, they are not routinely given a clear explanation of their personal risk of sight loss and likely disease trajectory. As one patient complained: “Everyone seems to be talking about numbers. What do these numbers mean? For me? For the future?”8 Not providing clear information on individual risk means lower-risk patients can be unduly fretful, while higher-risk patients may be left unaware of their true risk of sight-loss.
- Care providers don’t explain surgery from the start. Typically, initial consultations focus narrowly on laser treatment or eye drop compliance, without explaining glaucoma progression and long-term management options. This may seem appropriate, avoiding unnecessary worry for those at lower risk. However, one patient said they were “totally dumbstruck” when their provider suggested surgery, because they were not forewarned. Instead, individuals wanted to be “kindly” told the “brutal truths,” so they knew what to expect.8 This would build trust and reduce the shock patients feel when their glaucoma takes an unexpected turn.
Promoting a shared approach to care
People with glaucoma may have a greater appetite for information and involvement than generally realised by clinicians, which offers a real opportunity for creating a culture of shared decision-making.
Giving individuals the information they need, in a format that is right for them, will enable them to play a meaningful role in decisions. That includes clear and honest communication about the range of treatment options at the very beginning of the process, so that patients can prepare both emotionally and practically.2
Deciding whether to have surgery is a pivotal point in someone’s treatment plan and can cause anxiety.16 Patients must not feel that the decision is imposed upon them. Initiatives like Glaucoma UK’s Buddy Scheme can help by connecting patients with peers who have experienced similar choices.9
Allowing patients access to their records and test results would greatly facilitate effective shared care. This is especially valuable in a fragmented system, where records frequently fail to move between different care settings. Patients with access to their records would have more control over their data and a better understanding of disease progression.17 “If patients were more able to see what the problem was and how they were progressing, that would be helpful,” says Andrew Tatham at Princess Alexandra Eye Pavilion, Edinburgh.
In the future, mobile phone technology could allow patients to hold their own information, ensuring it is always available.18 Of course, there are practical challenges and security risks with such large-scale personal data sharing.19 Not every patient will trust the technology or want the responsibility. However, an “eye-care passport”, if managed securely, could help many patients.
Going further, willing patients could be encouraged to track their own disease progression. Home measurement of intraocular pressure can strengthen the professional-patient relationship and foster proactive care.20 Imran Masood at the Birmingham and Midland Eye Centre says he has private patients who use an at-home tonometer to measure their intra-ocular pressure – the only modifiable risk factor for glaucoma. “They’re able to keep quite a good watch on their own disease, and they can contact me if there’s a problem sooner than they would otherwise,” says Masood. “I think it solidifies that doctor-patient relationship.”
There are barriers to such an active form of patient involvement. The tonometers are expensive and not widely available, limiting their applicability. Some patients may not want the responsibility.20 It would also require additional education: patients would need to understand normal variations in eye pressure, to avoid anxiety from elevated but non-significant results.
Nevertheless, this form of patient engagement has potential to save money, by lowering ongoing care costs and reducing reliance on monitoring in physical care settings. For now, more work is required to make this economic case.
Conclusion
It is essential to address the current shortfalls in patient education and engagement which will help improve patient outcomes: both disease progression and overall wellbeing.1 Patients’ information needs can be met through public education initiatives, better communication practices and innovative technologies. In this, the eye-care charity sector has a major role to play and should be used more.Boosting patients’ education in this way will empower them to make informed decisions and take active roles in managing their condition.4,5 This will help reduce the likelihood of preventable sight loss – avoiding the associated societal costs, and invasive and expensive treatment options.1,3,14
Ensuring that patients are effectively educated about their disease and fully engaged in their treatment will help save sight.1
Gus Gazzard is the Director of Surgery at Moorfields Eye Hospital and Professor of Ophthalmology (Glaucoma Studies) at the Institute of Ophthalmology UCL, and NIHR Biomedical Research Centre.
Joanne Creighton is Chief Executive of Glaucoma UK.
References
1. Katz LJ, Myers JS, Herndon Jnr LW, et al. Interventional glaucoma: improving the patient-provider educational exchange. Clin Ophthalmol. 2024;18:3365–3374. doi: 10.2147/OPTH.S491287
2. Sleath B, Slota C, Blalock SJ, et al. Provider use of collaborative goal setting with glaucoma patients. Optom Vis Sci. 2014;91(5):549–555. doi: 10.1097/OPX.0000000000000244
3. Norell SE. Improving medication compliance: a randomised clinical trial. Br Med J. 1979;2(6197):1031–1033. doi:10.1136/bmj.2.6197.1031
4. Waterman H, Evans JR, Gray TA, et al. Interventions for improving adherence to ocular hypotensive therapy. Cochrane Database Syst Rev. 2013;2013(4):CD006132. doi: 10.1002/14651858.CD006132.pub3
5. Sleath B, Blalock SJ, Carpenter DM, et al. Ophthalmologist-patient communication, self-efficacy, and glaucoma medication adherence. Ophthalmology. 2015;122(4):748–754. doi: 10.1016/j. ophtha.2014.11.001
6. Glaucoma Research Foundation. National survey reveals glaucoma has significant impact on patients’ and caregivers’ daily lives and well-being. 5 September 2019. Accessed April 2025. Available at: https:// www.multivu.com/players/English/8600751-glaucoma-research-foundation-national-survey/
7. Lu TC, Semsarian CR, White A, et al. Journey to glaucoma care – trusting but uncertain and uninformed: a qualitative study. Clin Exp Optom. 2020;103(4):484–489. doi: 10.1111/cxo.12955
8. Fisher, K. Experience Engineers. The Future of Glaucoma: Essential Themes from Patient Perspective. November 2024
9. Glaucoma UK. Buddy scheme. Accessed September 2025. Available at: https://glaucoma.uk/ care-support/%20buddy-scheme/
10. Nguyen MH, Smets EMA, Bol N, et al. Fear and forget: how anxiety impacts information recall in newly diagnosed cancer patients visiting a fast-track clinic. Acta Oncol. 2019;58(2):182–188. doi: 10.1080 /0284186X.2018.1512156
11. Hamelin N. La relation médecin-malade dans le glaucome [The physician-patient relationship in glaucoma]. J Fr Ophtalmol. 2008;31(6 Pt 2):2S39–2S44.
12. Newman-Casey PA, Musser JA, Niziol LM, et al. Integrating patient education into the glaucoma clinical encounter: A lean analysis. J Glaucoma. 2019;28(5):415–422. doi: 10.1097/ IJG.0000000000001192
13. Hao Tan DN, Tham YC, Koh V, et al. Evaluating Chatbot responses to patient questions in the field of glaucoma. Front Med. 2024;11:1359073. doi: 10.3389/fmed.2024.1359073
14. Varma R, Lee PP, Goldberg I, Kotak S. An assessment of the health and economic burdens of glaucoma. Am J Ophthalmol. 2011;152(4):515–522. doi: 10.1016/j.ajo.2011.06.004
15. Musa I, Bansal S, Kaleem MA. Barriers to care in the treatment of glaucoma: socioeconomic elements that impact the diagnosis, treatment, and outcomes in glaucoma patients. Curr Ophthalmol Rep. 2022;10(3):85–90. doi: 10.1007/s40135-022-00292-6
16. Bicket AK, Le JT, Yorkgitis C, Li T. Priorities and treatment preferences among surgery-naive patients with moderate to severe open-angle glaucoma. Ophthalmol Glaucoma. 2020;3(5):377–383. doi: 10.1016/j.ogla.2020.05.003
17. Kashiwagi K, Tsukahara S. Impact of patient access to Internet health records on glaucoma medication: randomized controlled trial. J Med Internet Res. 2014;16(1):e15. doi: 10.2196/jmir.2795
18. Rodriguez-Una I, Azuara-Blanco A. New technologies for glaucoma detection. Asia Pac J Ophthalmol. 2018;7(6):394–404. DOI: 10.22608/APO.2018349
19. Li F, Wang D, Yang Z, et al. The AI revolution in glaucoma: Bridging challenges with opportunities. Prog Retin Eye Res. 2024;103:101291. doi: 10.1016/j.preteyeres.2024.101291
20. Raveendran R, Prabakaran L, Senthil R, et al. Current innovations in intraocular pressure monitoring biosensors for diagnosis and treatment of glaucoma—novel strategies and future perspectives. Biosensors. 2023;13(6):663. doi: 10.3390/bios13060663
Read The Articles Here
Article 1: Introduction
A clear look at a better future for glaucoma care. Glaucoma is one of the most common causes of vision loss and blindness. More than 3% of people over 40 have glaucoma, and perhaps 10% of over-75s.
Article 2: Setting the Scene
A shared vision of the future of glaucoma care. Glaucoma patients and healthcare professionals have different perspectives on glaucoma care, but they share many of the same priorities.
Article 3: Artificial Intellegence
AI could help the highest-risk patients get glaucoma care . While artificial intelligence has many possible uses in glaucoma, its greatest potential is in identifying those at greatest risk.
Article 4: Sustainable Service Delivery
Ensuring the right patient is seen by the right person at the right time. How can the healthcare system ensure that every glaucoma patient is seen, while also maintaining empathic health professional - patient relationships.
Article 5: Innovative Treatments
The new cornucopia of treatments for glaucoma. From new types of pharmaceuticals to novel surgical approaches, there are now many more treatments available for glaucoma.
Article 6: Health Equality
Ensuring access to glaucoma care is truly equitable. Poor people and members of ethnic minorities often receive worse glaucoma care. Fixing these inequities requires a tailored approach.
Article 7: Patient Education and Engagement
People with glaucoma need clarity about their condition. Patients with glaucoma who are educated about their diagnosis are more likely to actively engage in their care and often have better outcomes.
Article 8: Conclusions and Recommendations
What if we got it right? The Future of Glaucoma Care in the UK. Shaping the future of glaucoma care at every level will not only improve patients’ lives but deliver lasting benefits for society.
© Santen 2025. medicalaffairsuk@santen.com