Glaucoma Care: Outside the Consulting Room

Whether a patient is advised that they are a glaucoma suspect, or confirmed to have glaucoma, an appointment with an optometrist or an ophthalmologist can be overwhelming. But what happens after they leave your practice? 

Receiving a glaucoma diagnosis or learning about the progression of this vision-threatening condition can provide clarity but often brings confusion and distress along with emotional and practical challenges. Patients often face an array of decisions and potential lifestyle changes. The nature of follow-up conversations can grow increasingly complex as the disease progresses, reflecting ever evolving challenges including mental health and financial distress. 

After the consultation, patients may leave the clinic with many questions and uncertainties. Those newly diagnosed with early-stages of glaucoma may feel a mixture of anxiety and relief – relief that the disease has been caught early, and anxiety around what lies ahead. Patients with more advanced stages may have different concerns, such as the need for immediate treatment or grappling with a reduction in vision. 

INFORMATION GAP 

Although the optometrist or ophthalmologist may have provided detailed guidance on treatment options, understanding the information and instructions in one session is challenging, particularly if there is an element of underlying anxiety. Explanations concerning prescribed eye drops, lifestyle adjustments, and surgical interventions can be time limited for the clinical eye care team, particularly with a diagnosis that involves complex terminology and potential long-term consequences. 

Often, what the optometrist or an ophthalmologist has said differs from what the patient hears, and the patient leaves the clinic with a cloud of questions: “What was I told? I am not sure what the laser involves? How long do I need to use the drops for?” and the list goes on. 

These scenarios are commonly reported to our orthoptist patient educators. We are often told that there is limited explanation of why the in-clinic tests need to be done. Also, many do not understand why the tests need to be repeated with the ophthalmologist after they have already been performed by the optometrist. 

Glaucoma affects 2.3% of the population aged 55 years or older (approx. 180,000 older Australians).1 This older age group often finds it harder to travel to appointments, feels more isolated, and is more reliant on others to assist them in their glaucoma journey. Glaucoma certainly underscores a person’s decreasing independence. 

The reality is, after the initial consultation, much of the work in managing glaucoma falls on the patient. This can feel daunting, especially as glaucoma is a progressive condition that requires constant monitoring and adherence to treatment to preserve sight. For some, new questions and uncertainties may arise within hours or days of the appointment, such as how to best manage their eye drop regimen, potential side effects of medications, treatment options or how the condition may impact daily activities.

Patients may also struggle to understand how their specific form of glaucoma might progress and often turn to ‘Dr Google’ for answers. Even with educational pamphlets and online resources, we often find that the patients seek more personalised, accessible support as they adjust to the lifestyle changes required to manage their condition. 

A SAFE SPACE 

Glaucoma Australia’s support platforms play a critical role in bridging the gap between eye appointments. We offer patients a safe space to ask questions, express concerns, and learn from the experience of others. Mental health, financial aspects, confusion surrounding treatments, and independence underpin many of the support calls that we receive on a daily basis. 

A recent snapshot of calls to Glaucoma Australia (July 2024) showed that support calls can last for up to an hour and a half, and almost 50% of calls are not directly related to glaucoma and its treatment, but to a range of other issues. 

Over one third of people occasionally experienced anxiety around their glaucoma, a further 20% were frequently anxious, and 40% of people requested a support call from Glaucoma Australia within a month. These statistics highlight the impact of glaucoma, not only on the eyes, but on the person as a whole.

Clinical practitioners do not have the ‘luxury of time’ in the consulting room to answer all their patient’s questions and allay their concerns and fears, while patients often do not feel comfortable ringing back to ask. 

Glaucoma Australia fills this gap with experienced clinical orthoptists who hold a broad knowledge of glaucoma and its treatment options, an understanding of mental health impacts and an awareness of third-party support services - and they are not time limited. 

As glaucoma progresses, the questions become more detailed and, at times, much more complex, for example: 

- I want someone to listen and understand how I am feeling; I am going blind; I am anxious; I feel depressed; I feel very uncertain. 

- I was prescribed glaucoma drops at night. I have not started using them as I am unsure. 

- I am booked to have selective laser trabeculoplasty (SLT) in two hours – should I go through with it?

- They changed my drops, and I cannot manage the new bottle – I am traumatised. Can you help? 

- What supplements/dietary changes will benefit my glaucoma?

- My eyes are red and painful with drops – what should I do (to help)? 

- Are there any exercises that I can do to control my glaucoma? 

- I had to give up my driver’s licence and I feel very isolated. I have no support from my family. Is there anyone in my local area I could meet with for a cuppa? 

- I am going travelling. How can I store my drops? Will travelling on a plane increase my eye pressure?

Glaucoma Australia educates patients through a variety of accessible resources and programs designed to increase understanding and support management of the condition. We provide detailed information through online resources, such as articles, videos, live webinars, and downloadable guides covering topics from diagnosis and treatment options to lifestyle tips. 

Through our SiGHTWiSE patient support program, our team of orthoptist patient educators offer one-on-one tailored support, answering questions and explaining medical procedures, tests, and treatment plans as an extension of the care given by the clinician.

INFORMATION AT THE RIGHT TIME 

The Sightwise program takes a phased approach, so that the information relayed to patients is relevant to the stage of their glaucoma journey:

• Stage 1 = Suspect diagnosis (new suspect): Explore diagnosis response; provide basic information; promote ophthalmology appointment; provide referral resource. 

• Stage 2 = Establish treatment/recent diagnosis (first three months of diagnosis): Discuss treatment plan; provide education, resources, and support; discuss ongoing appointment and treatment requirements; provide referral resource. 

• Stage 3 = Adherence and family (six months post diagnosis): Review adherence to treatment plan; identify reasons for nonadherence; educate to improve adherence; encourage relatives to get tested. 

• Stage 4 = Living with glaucoma (12 months post diagnosis): Grow knowledge and confidence in eye health management; promote appointment adherence; promote treatment adherence; educate and support change management. 

Glaucoma Australia offers avenues for patients to connect, both online and in-person, to reduce confusion and isolation, and facilitate support. Patients can share stories and ask questions from those who truly understand what they are going through. We also connect patients with mentors who provide encouragement and real-life insight into actively living with glaucoma. 

Additionally, we strongly encourage patients with glaucoma to inform their family members about the importance of getting tested. As glaucoma can be hereditary, direct family members, i.e. siblings, parents, and children, are 10 times more likely to develop glaucoma. 

By encouraging families to get tested, we aim to promote early detection, which is crucial in preventing vision loss. 

Our recent patient reported outcome measures (PROM) (July 2024) for SiGHTWiSE demonstrated the effectiveness of the program: 

• 92% attended their recommended glaucoma appointments (care provider compliance), 

• 82% of participants adhered to their prescribed medications, versus 50% of nonparticipants (treatment compliance), 

• 50% reduction in level of anxiety/wellbeing/ support (mental health), and

• Knowledge of glaucoma and how it is treated increased from 37% to 53% after receiving education and support, rating their knowledge as ‘above average’ or ‘excellent’ (knowledge and understanding). 

BUILDING THE JIGSAW 

Ongoing monitoring for glaucoma is key – optometrists are well-placed to undertake regular screening, detection, and early referral for ophthalmic co-management if there is suspicion of glaucoma or detection of glaucoma progression. Glaucoma Australia’s SiGHTWiSE program is supported by early career optometrists and Masters of Orthoptics students and plays an active and vital role in supporting patients, promoting early detection, and improving patient outcomes.

Glaucoma can be a difficult condition to manage, and its mental, emotional, and financial toll should not be underestimated. 

Conversations with glaucoma patients require sensitivity, and there is an increasing reliance on support groups to extend clinical care and fill the gap in-between optometry and ophthalmology appointments. 

Glaucoma management is a jigsaw – the pieces of medical care, treatment, and support, must be joined together to maintain a status quo for our patients. 

By taking a holistic, collaborative approach to patient support, patients report that they feel much better equipped to navigate their glaucoma journey. 

If you or a loved one requires information or support, reach out on our free support line on 1800 500 880 (Monday – Friday AEDT). 

References: 

1. National Rural Health Alliance, Eye and vision health in rural Australia, fact sheet, available at: ruralhealth.org.au/ sites/ default/files/publications/nrha-eye-and-vision[1]healthfactsheet-final.pdf [accessed Dec 2024]. 

2. Glaucoma Australia Impact Survey July 2024.