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 next, when they leave your practice?

Receiving a glaucoma diagnosis or learning about the progression of this vision-threatening condition from an eye health professional can provide clarity, but often brings confusion and distress, as well as emotional and practical challenges. Patients often face an array of decisions and potential lifestyle changes that must be managed with the support of family, friends, and (hopefully) support groups. The nature of follow-up conversations – particularly with support groups such as Glaucoma Australia – can grow increasingly complex as the disease progresses, reflecting the evolving challenges associated with glaucoma. 

After the consultation, patients might leave the clinic with countless 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 adjustments, surgical options, or grappling with a reduction in vision. Glaucoma can certainly bring about an element of mental health distress.

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’m not sure what the laser involves? How long do I need to use the drops for?” … and the list goes on. Glaucoma attracts confusion for the newly diagnosed patient. 

These scenarios are commonly reported to our Glaucoma Australia orthoptist patient educators. We are often told by patients that there is limited explanation of “what and why” in-clinic tests, such as a visual field, are being done, and why they need to be repeated at each doctor’s visit. More so, they do not understand why they need to repeat these tests with the ophthalmologist after they have already been performed with the optometrist. All of this can come with an element of financial distress.

 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. For some, new questions and uncertainties may arise within hours or days of the appointment. Patients may be uncertain about how best to manage their eye drop regimen, the potential side effects of medications, treatment options or the impact of their condition on their daily activities. Additionally, patients may struggle to understand how their specific form of glaucoma might progress and what to expect, often turning 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, as an extension of clinical care. Glaucoma Australia offers 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 received by our Glaucoma Australia orthoptist patient educators. 

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 targeted 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 frequentlyanxious regarding their glaucoma, 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 eye, 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, an awareness of third-party support services, and are not time limited. As glaucoma progresses, the questions posed to our orthoptist patient educators become more detailed and, at times, much more complex, for example: 

• I want someone to listen and understand how I am feeling; I am not aware of any help; 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. What should I do? 

• 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? 

• Why do I need more than one drop? 

• 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? 

• I am bedridden because of glaucoma surgery. I am an overseas student and cannot work for now. What financial help can I get? 

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 on glaucoma through online resources, such as articles, videos, live webinars, and downloadable guides covering topics from diagnosis and treatment options to lifestyle tips. Through Glaucoma Australia’s Sightwise patient support program, our team of orthoptist patient educators offers 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 staggered approach, such that the information relayed to our 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; drive family link ‘at risk’ testing; educate and support change management. 

Glaucoma Australia offers avenues for patients to connect, both online and in-person, to reduce confusion and isolation, and promote support. In this way, patients can share stories and ask questions from those who truly understand what they are going through. Glaucoma Australia also connects 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, Glaucoma Australia aims to promote early detection, which is crucial in preventing vision loss. 

Our recent patient reported outcome measures2 (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% 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). 

“Glaucoma can certainly bring about an element of mental health distress”

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. Sightwise, supported by early career optometrists and Masters of Orthoptics students, plays an active and vital role in supporting patients, promoting early detection, and improving patient outcomes in glaucoma care. 

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. 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 are better equipped to navigate their glaucoma journey. 

Val Tosswill is a Senior Orthoptist Patient Educator with Glaucoma Australia. She has a diverse career spanning private orthoptic practice, disability, rehabilitation, education, low vision, clinical research, ophthalmic practice, and practice management. Ms Tosswill has served on Orthoptics Australia (OA) federal and state Councils of Management, was OA Federal President (2002- 2004), and was awarded an OA Fellow in 2007.

Natasha Sikman BOOS is a passionate and dedicated Senior Patient Educator at Glaucoma Australia. With extensive expertise in eye health, Ms Sikman plays a pivotal role in patient support and education, increasing awareness, fostering early diagnosis, and guiding patients through their glaucoma journey. As a casual academic at La Trobe University she mentors the next generation of orthoptists, showcasing her dedication to the field and to advancing eye health and patient care. 

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-healthfactsheet-final.pdf [accessed Dec 2024]. 

2. Glaucoma Australia Impact Survey July 2024.