Glaucoma Diagnosis: Helping Your Patients Adjust

Impact of a Glaucoma Diagnosis

It is important to acknowledge the impact of receiving a glaucoma diagnosis upon a person’s mental health and wellbeing because not detecting and addressing these impacts can affect both medication adherence^3,4 and overall visual outcomes⁵ of glaucoma management.

Experiencing negative emotions is one of the more commonly reported impacts of receiving a glaucoma diagnosis, and these emotions can range from shock and fear, to anxiety, anger, and depression.^6-9 These feelings may be caused by glaucoma symptoms, such as perceived pain or loss of visual field,⁹ but also factors such as knowledge of intraocular pressure (IOP) levels or elevated risk of vision impairment, or changes in eye appearance due to irritation.⁷ Fear of blindness is not uncommon, especially in people who are younger when first diagnosed – one study found 37% of people with newly diagnosed primary open angle glaucoma experienced the fear of going blind.⁶

A glaucoma diagnosis often carries a self-management burden, thereby impacting quality of life through, for example, disrupting social activities.^8-10 This disruption can create a sense of social isolation that can perpetuate negative emotions.^7,11 A sense of reduced quality of life, such as ability to engage in daily activities, is closely linked to mental health issues such as fear of blindness and depression.^5,6,12

These challenges can also impact medication adherence. For example, a recent study identified that higher levels of adjustment to a glaucoma diagnosis, as well as greater optimism and satisfaction with life, were associated with better adherence to glaucoma medication.⁴ Depression has also been linked to lower adherence with glaucoma medication.³ Overall, the mental health impacts of living with glaucoma can be far-reaching, thus there is a need for optometrists to know of these potential impacts and ways they can support their patients.

Living with glaucoma is characterised by inherent uncertainty, as the condition does not progress linearly and is denoted by fluctuations in IOP

Helping Patients Adjust to a Diagnosis

There are a few things that optometrists can do to support their patients as part of delivering a glaucoma diagnosis:

• Use communication strategies to navigate difficult conversations,

• Make time to explain and acknowledge the uncertainties of glaucoma management and the impact this can have on laying out the patient’s journey,

• Signpost to resources and services to ensure easy access to reliable information, and revisit the topic of support periodically, and

• Highlight opportunities to take part in research.

We will address each of these in turn. It’s also very important to look after your own mental health as a clinician when delivering news of a diagnosis and managing potential patient distress.

Communication Strategies

Optometrists are sometimes tasked with breaking a glaucoma diagnosis to patients. Delivering bad news can be difficult for both the optometrist and the patient. Effective and clear communication is key to help reduce stress for patients and help them make decisions about their healthcare.¹³ Communication is a core competency in the optometry profession, and like all things, the skill of breaking bad news to patients is developed with practice.

One way to deliver bad news is via the evidence-based SPIKES model.¹⁴ The SPIKES model is a six-step protocol – Setting, Perception, Invitation, Knowledge, Emotion, Strategy/Summary – originally created to deliver bad news to people with a cancer diagnosis. The protocol aims to create a ‘patient-first’ approach.

Setting

This includes mentally preparing and reviewing what you will say to a patient and preparing how to respond to a patient’s emotional reaction or questions. This also includes the physical setting inside the clinic: ensuring privacy, involving significant others, trying to connect to the patient, and managing time constraints you may have as the optometrist.

Perception

Ask open-ended questions to determine how much a person knows about glaucoma, what it is, and what can happen. Optometrists can use this information to correct any misinformation and tailor what to include based on what they know already. This will also help you understand if they have any unrealistic expectations with respect to treatment and management.

Invitation

It’s important to determine how much information the patient would like to receive as every person is different. In some cases, patients may want to know as much as possible, but in others, it can be overwhelming. It’s important to ask the patient how much information they would like to know and then offer to answer any questions in the future or to speak to a significant other as well.

Knowledge

The goal is to provide sufficient knowledge and information to the patient. Therefore, clear, accessible language should be used. Try not to use technical words and avoid being overly blunt, as this can evoke anger, and sometimes, the patient may blame the bearer of bad news. Do give information in small chunks and check in regularly while explaining the diagnosis and management to ensure the patient understands.

Emotions

Knowing how to respond to a patient’s emotions can be a difficult challenge and patients will react differently to a glaucoma diagnosis. It’s important to observe a patient’s reaction to the diagnosis and use open questions to ask them what they may be thinking or feeling. Follow this up by acknowledging their emotions with an empathic or validating response. For example, an empathic statement would be, “I know you weren’t expecting to hear this”, and a validating response, “I can understand why you feel this way”. This can help express solidarity with the patient and validate their thoughts or feelings as normal to have.

Strategy/Summary

Having a clear plan of action can help reduce feelings of anxiety for patients after receiving the news. This may be a treatment plan, referral, or even a plan to have another discussion. Exploring the other five steps of the SPIKES model will help you decide, with the patient, the most appropriate plan of action.

Though the SPIKES model was developed almost 25 years ago, it remains a widely taught model of delivering bad news. A 2018 survey of 1,337 patients regarding the SPIKES model showed SPIKES largely reflected their own perspectives on how they preferred bad news to be delivered.¹⁵ The study confirmed that SPIKES remains a valuable tool with a few key takeaways:

1) Ensure that empathy comes across,

2) Take time and don’t rush the discussion, and

3) Explain the diagnosis, prognosis, and treatment, and check to see if the patient understands.

Additional steps suggested from this study include:

1) Ensure timely follow up is planned,

2) Consider offering additional information about the condition that patients can access later, and

3) Provide information about patient support groups. For people with glaucoma, this could be Glaucoma Australia.

Acknowledging Uncertainty

Living with glaucoma is characterised by inherent uncertainty, as the condition does not progress linearly and is denoted by fluctuations in IOP, often despite best efforts with treatment. This can make it difficult for optometrists to convey prognostic information or to describe what to expect on the treatment pathway. This uncertainty carries significant mental health ramifications; most commonly fear of blindness and depression when high pressure episodes result in loss of visual function and restriction of activities.^8,10 These impacts can be compounded by family history of glaucoma, as this leads to concerns and anxiety regarding family members potentially going through the same experience in the future.^9,10

Because of such uncertainties, it is important to avoid making assumptions about a person’s mental health status based on their glaucoma severity or level of visual function. Research studies show these parameters do not correlate well with perceived quality of life until glaucoma is quite severe, when one should be intervening with support at a much earlier juncture. For example, a previous study identified that people with glaucoma were more likely to report low mood and symptoms of depression if they perceived their visual function was getting worse, but this wasn’t reflected in clinical measures of visual acuity and visual fields.⁵ Another study found that visual acuity, disease severity, and visual field measurements only moderately correlated with glaucoma-related quality of life.¹² It is, therefore, important that optometrists are prepared to signpost to resources and services to address mental health for any person after diagnosis, even in cases where there is not significant loss of visual function.

Signposting to Resources and Services

As a clinician, it is important to build trust in your relationships with your patients by both providing reliable information, and signposting to reputable organisations and information sources. Previous research about the impact of a glaucoma diagnosis^7,9 shows that people prefer to get information direct from their eye care practitioner, rather than accessing it online. Using communication strategies, such as those outlined above, can help you convey the most important information without overwhelming on the details. However, from the lived experience perspective, there is no substitute for patient support groups such as Glaucoma Australia, and research shows the important role of peer support in coming to terms with a glaucoma diagnosis.^7,10

Glaucoma Australia has the Sightwise community, which includes trained orthoptist educators and health counsellors, to answer any questions a patient may have. Family support is also very important, and you can prompt consideration of this for your patients by asking them about who might be able to support them if they have any trouble managing their glaucoma at home. Not all people with glaucoma feel ready to make use of support from peers or family immediately post-diagnosis,^10,11 so revisiting the topic of support periodically is a good idea, as the helpline, peer support and education programmes offered by Glaucoma Australia are available at any point.

There is no substitute for patient support groups such as Glaucoma Australia

Supporting Glaucoma Research

One thing optometrists may think about less often is the possibility for their patients to participate in research. Some patients are quite proactive and are keen to contribute to research but may not know how to. Some research has highlighted that glaucoma research can offer hope to people with a glaucoma diagnosis.⁸ Optometrists can play a role here in referring patients to ophthalmic research departments or research institutes. For example, the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG) aims to identify people who are at high risk of glaucoma progression via genetic screening. Research institutes, such as Save Sight Institute, have a number of clinical registries that optometrists can register and join. Cerulea Clinical Trials at the Centre for Eye Research Australia (CERA) also has a clinical registry, allowing optometrists to refer patients who may be interested in research without needing the optometrist to refer to a specific clinical trial.

Conclusion

This article has provided an overview of the mental health impacts of receiving a glaucoma diagnosis, and ways optometrists can help their patients adjust to the diagnosis. Although we focussed on actions that can be taken as part of delivering a glaucoma diagnosis, it is important to use routine reviews as an opportunity to check in, as longer periods post diagnosis can increase the risk of experiencing poorer mental health for people with glaucoma. The programmes and strategies mentioned here can still be successfully used in the later stages post-diagnosis, so it is never too late to have the conversation with your patients about how they are feeling about managing their glaucoma.

Dr Marianne Coleman BSc (Hons) Orthoptics MRes PhD is a Senior Research Fellow, working at the National Centre for Healthy Ageing, a collaboration between Monash University and Peninsula Health.

Dr Flora Hui BOptom MPhil PhD is an optometrist and Research Fellow at the Centre for Eye Research Australia. A passionate science communicator and promoter of STEM (science, technology, engineering, and mathematics) across multiple media platforms, she was selected for ABC Top 5 (Science) and is a Superstar of STEM. Her clinical research focusses on new treatments and diagnostics for neurodegenerative diseases such as glaucoma and Alzheimer’s disease.

Professor Bang Bui BOptom MOptom PhD PgCertOcTher is Deputy Head of the Department of Optometry and Vision Sciences at the University of Melbourne. His research group undertakes preclinical and clinical studies of ocular diseases, including glaucoma and diabetes, with a particular interest in understanding interactions between the vasculature, immune cells, and neurons during the very earliest stages of disease development.

References

1. Jayaram H, Kolko M, Gazzard G, et al. Glaucoma: now and beyond. The Lancet 2023;402:1788-1801. doi: 10.1016/S0140-6736(23)01289-8.
2. Peters D, Bengtsson B, Heijl A. Lifetime risk of blindness in open-angle glaucoma. Am J Ophthalmol 2013;156:724-730. doi: 10.1016/j.ajo.2013.05.027.
3. Friedman DS, Okeke CO, Jampel HD, et al. Risk factors for poor adherence to eyedrops in electronically monitored patients with glaucoma. Ophthalmology 2009;116:1097-1105. doi: 10.1016/j.ophtha.2009.01.021.
4. Malewicz K, Pender A, Jankowska-Polańska B, et al. Impact of sociodemographic and psychological factors on adherence to glaucoma treatment – a cross-sectional study. Clin Ophthalmol 2024;18:2503-2520. doi: 10.2147/OPTH.S475812.
5. Jampel HD, Frick KD, Janz NK, et al. Depression and mood indicators in newly diagnosed glaucoma patients. Am J Ophthalmol 2007;144:238-244. doi: 10.1016/j.ajo.2007.04.048.
6. Janz NK, Wren PA, Lichter PR, et al. Fear of blindness in the Collaborative Initial Glaucoma Treatment Study: patterns and correlates over time. Ophthalmology 2007;114:2213-2220. doi: 10.1016/j.ophtha.2007.02.014.
7. Hua Y, Lu H, Dai J, et al. Self-management challenges and support needs among patients with primary glaucoma: a qualitative study. BMC Nurs 2023;22:426. doi: 10.1186/s12912-023-01527-y.
8. ae Lee H, Kim SN, Kim HY, Sohn SK. Illness experience of glaucoma patients. Research in Community & Public Health Nursing (RCPHN) 2024;35. doi: 10.12799/rcphn.2024.00458.
9. Iyigun E, Tastan S, Mumcuoglu T, et al. Life Experiences of patients with glaucoma: a phenomenological study. Journal of Nursing Research 2017;25. doi: 10.1097/JNR.0000000000000172.
10. Wu P-X, Guo W-Y, Xi S-X, et al. Patients’ experience of living with glaucoma: a phenomenological study. Journal of Advanced Nursing 2011;67:800-810. doi: 10.1111/j.1365-2648.2010.05541.x.
11. Glen FC, Crabb DP. Living with glaucoma: a qualitative study of functional implications and patients’ coping behaviours. BMC Ophthalmol 2015;15:128. doi: 10.1186/s12886-015-0119-7.
12. Goldberg I, Clement CI, Chiang TH, et al. Assessing quality of life in patients with glaucoma using the Glaucoma Quality of Life-15 (GQL-15) questionnaire. J Glaucoma 2009;18:6-12. doi: 10.1097/IJG.0b013e3181752c83.
13. Jalali R, Jalali A, Jalilian M. Breaking bad news in medical services: a comprehensive systematic review. Heliyon 2023;9. doi: 10.1016/j.heliyon.2023.e14734.
14. Baile WF, Buckman R, Kudelka AP, st al. SPIKES – A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000;5:302-311. doi: 10.1634/theoncologist.5-4-302.
15. Mirza RD, Ren M, Guyatt GH, et al. Assessing patient perspectives on receiving bad news: a survey of 1337 patients with life-changing diagnoses. AJOB Empir Bioeth 2019;10:36-43. doi: 10.1080/23294515.2018.1543218.