Glaucoma is the leading cause of irreversible blindness worldwide with one in eight Australians over 80 developing the disease. Although it may not be possible to prevent this ‘sneak thief of sight’, it is possible to avoid significant visual loss, or blindness. Early detection, effective treatment and patient education are critical.
In Australia, only 50 per cent of people with glaucoma are diagnosed and only 30 per cent of patients treated with monotherapy eye drops are treatment compliant after two years.
These alarming statistics point to an unnecessary level of avoidable vision impairment and blindness. On the flip-side, they are encouraging more collaborative care and driving research into new surgical treatments.
Clinical Associate Professor Andrew White believes more can be done to ensure a higher level of detection, diagnosis and treatment compliance. It comes down to patient education, the expertise of eye care professionals and an effective model for collaboration.
If both the optometrist and the ophthalmologist are not working from the same dataset then rather than co-managing they are simply working in parallel
“For some time studies, such as the Melbourne Visual Impairment Project (Melbourne VIP), have alerted us to the fact that 50 per cent of people with glaucoma in countries such as Australia are undiagnosed,” said Dr. White.
“The numbers are the same in nearly all developed countries. The undiagnosed rate may be up to 90 per cent in developing countries.”
Depressingly, he said, Melbourne VIP showed a relatively high proportion of patients newly diagnosed with glaucoma had seen an eye care provider in the previous 12 months.
“This means there needs to be better education of what glaucoma is and how to effectively diagnose it, because at present, it is not happening. Glaucoma is an asymptomatic disease unlike cataract or macular degeneration for example, and so most screening is opportunistic. Those that don’t get an eye check, even for reading glasses, will easily be missed.”
While some may assume the answer lies in mass screening programs, Dr. White said studies had shown these would be inefficient and not cost effective. “Targeted screening of at risks groups (for example people with a strong family history) may be more effective. More work needs to be done to target these groups. Glaucoma is a leading cause of irreversible blindness and any damage once found cannot be reversed at present. Obviously the earlier a diagnosis is made the more vision can be preserved.”
Sydney optometrist Margaret Lam said unless patients are made aware of their risk of glaucoma, they are unlikely to be proactive about eye screening. “Patients’ lack of understanding of glaucoma is a real problem. Because the disease is largely asymptomatic, patients have the false perception that ‘I would know if I had it’ and so they don’t get their eyes checked.”
Misconceptions in Optometry
Dr. White believes many optometrists still under recognise normal tension glaucoma (NTG) and overcall ocular hypertension. “One of my particular bugbears is the way intraocular pressure (IOP) is measured in optometry practices. We have known for a long time that the false positive rate for raised IOP with puff tonometry is 50 per cent plus. This doesn’t really change, no matter how many times you do it. The deluge of referrals into the National Health System on the basis of the introduction of the National Institute for Health and Care Excellence (NICE) guidelines has borne this out. Patients hate it anyway and would much rather a simple drop of anaesthetic and applanation tonometry for a more accurate reading of IOP. This would save time and bother for everyone.”
He said reliance on puff tonometry may be reduced as optical coherence tomography and visual field testing becomes more common in optometry practices, and there is a greater appreciation of NTG.
Misconceptions Among Patient
As you’d expect, the majority of the general public have a limited understanding of glaucoma. “Glaucoma is really a form of accelerated aging of the optic nerve,” said Dr. White. “Intraocular pressure is not even part of the definition, yet if you ask the person in the street or even the average medical student what glaucoma is they will always say ‘high pressure’.
“When talking to patients, I describe it as a disease of the optic nerve which I liken to an electrical cable that is fraying or wearing out faster than it would though aging which results in irreversible peripheral vision loss. You don’t have to have high IOP to have glaucoma but lowering it reduces the chances of progression and helps preserve vision. Treatment and follow-up needs to be lifelong and modified over time to find the right treatment mix that halts glaucoma progression and preserves lifelong vision. Constant follow-up is necessary as the patient has no way of knowing if they are stable or not.
“I also get the patients to own the disease, contact Glaucoma Australia and educate those around them especially family members who are more likely to be affected to get regular eye checks.”
Dr. White said patients can become confused about their symptoms, treatment and the eye disease they have. “At least once a month I find a patient who was told they had glaucoma, taken one bottle of eye drops and believed they were now ‘cured’… Most patients believe they can ‘feel’ a raised intraocular pressure yet most higher IOP is somewhere between 21-32 mmHg and it is rare to feel pain from pressure in the eye until the IOP hits 40mmHg plus. Patients also frequently confuse glaucoma with cataract,” he said.
Ms. Lam stressed the need for clear patient communication and regular follow up to ensure patients are treatment compliant. “Enabling patients to have a detailed understanding of their own conditions so that they take ownership of their condition is critically important,” said Ms. Lam. “I find, with all my patients, there is always potential for an optometrist to improve the care of a patient who is seeing their ophthalmologist. There can be small but critical details that they have misunderstood from their ophthalmologist visit, or even considerable miscommunication where we can clarify these details for them so that the outcome is better care.”
Ms. Lam cited the example of an elderly patient who visited her practice for glasses.
“Recently the mother of one of our patients was brought in by her son for an eye check. Her son, an existing patient of ours, wanted to refer his mother for some new glasses.
“After taking a detailed history, we established that glaucoma had been diagnosed approximately three months prior and the patient had been advised to ‘take these eye drops’. She had finished the bottle after one month and been very blasé about the need for filling the script for further eye drops to manage her intraocular pressure.
“A discussion with the patient and her son, and a detailed explanation about the essential nature of the eye drops, made them realise how important it was to ensure she continue with further eye drops and be closely monitored by us and the ophthalmologist,” said Ms. Lam.
Eye drops are most commonly used to treat glaucoma however adherence to an eye drop regime can be a challenge for many patients.
We know from PBS data that adherence rates for monotherapy eye drops are about 30 per cent after two years of treatment and continue to fall after that. This is similar to adherence rates for other asymptomatic diseases like hypertension and diabetes and is the same the world over. For twice daily dosing and multiple drop therapy, the rate is more like 10 per cent.
“A typical non adherent patient is young, doesn’t take regular medications and is busy,” said Dr. White. “Shift workers are the worst as they have no routine. These days I have a very honest discussion with them about the likelihood of them being adherent to drop therapy and discuss other options with them which they often prefer. Studies have shown the most adherent patients are ones directly affected by blindness in their family because they understand better. Elderly patients who are used to the routine of medications are typically very good. I find that female patients tend to be more adherent then males unless they have a wife who is adherent for them!”
Dr. White said depot preparations and surgical options for glaucoma management are increasingly being adopted, relieving patients of the need to continuously use drops. “With optometry students doing therapeutic accreditation, there is a widely held belief that all glaucoma is best treated with eye drops that patients actually take (not true) and that surgical interventions in particular are old fashioned and not appropriate. The reverse is actually true now.
“For a period of time after the introduction of prostaglandins, surgical management of glaucoma dropped off. However those same patients are now getting older, their glaucoma is getting more advanced and they are requiring surgery. In addition, we know patient adherence is poor and so nearly every major drug company and the laser companies have invested in new surgical options such as MiGs (minimally invasive glaucoma surgery), selective laser trabeculectomy (SLT) and depot preparation of medications which are the way of the future. One only has to scan the MBS item number usage of surgical procedures for glaucoma, which is publically accessible, to see this is the case.”
Although “good studies are relatively hard to find” he said patients seem to prefer the options of a surgical procedure over multiple eye drop regimes, which studies show negatively impact quality of life.
Co-management and the RANZCO Guidelines
In 2016 the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) introduced new guidelines for co-management of glaucoma. The RANZCO referral pathways make use of the best evidence base available to ensure optimal patient care with appropriate delineation of responsibility so that the right patient can be seen by the right provider at the right time.
Dr. White said the ideal scenario for co-management of glaucoma is where there is a good working relationship with an optometrist who is happy to manage a patient at relatively low risk of going blind from glaucoma (a suspect, ocular hypertensive or stable open angle glaucoma with a small amount of visual field loss – not narrow angle or secondary glaucomas) and can do the required testing with common equipment to their ophthalmologist. This would allow progression to be accurately monitored with clear regular communication and sharing of examination and testing results with clear criterion on when to refer back.
“The biggest single problem is a lack of communication and sharing of information. If both the optometrist and the ophthalmologist are not working from the same dataset then rather than co-managing they are simply working in parallel, which at the end of the day is an unnecessary duplication of services.
“There also needs to be a commonality in the way examinations are done. Puff tonometry is not the same as applanation tonometry and each visual field testing machine is different in the way it measures visual field loss, and therefore not comparable. Likewise each OCT is a bit different in the way it does things.
“Using multiple types of testing typically adds to the noise of already noisy data. If we are not directly comparing the same things, then we have no idea as to whether a patient is progressing in terms of their glaucoma – which at the end of the day is something we are all trying to prevent.”
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Writer Clin. Assoc. Prof. Andrew White
Managing Glaucoma in Remote Australia
Co-management and collaboration between health professions is nothing new to glaucoma specialist Dr. Ashish Agar, Chair of the RANZCO Indigenous Committee. He grew up in regional NSW and has worked in Far Western NSW with the Outback Eye Service, based at the Prince of Wales Hospital, since its inception. Additionally, he is Director of the Ophthalmology Service at Broken Hill Hospital and conducts clinical and surgical visits to Bourke.
“The recent talk of the importance of co-management has been amusing – our Outback Eye Service has had formalised relationships with our optometrists since 2003,” he told me.
It was a case of necessity being the mother of invention. While outreach trips in earlier days consisted of a registrar, orthoptist, nurse, consultant, optometrist and sometimes even a dispenser, these days it’s a different story.
“When you’re going out to remote communities several times a year it can be logistically difficult and expensive to get an entire team on the same flight. So whereas in the early days an optometrist would have the registrar on site to consult, now we work by phone and email – much like the real world experience of practising in the city.”
In Far Western New South Wales with the Outback Eye Service Dr. Agar works collaboratively with Sydney optometrist Kyriacos Mavrollefteros to screen and treat patients from the region. Additionally he and his team have established relationships with regional optometrists.
Dr. Agar said while there can be some delays in escalating patients, there are advantages to this staggered approach to visiting remote communities. “This model gives us greater continuity of care because health professionals are seeing patients more often over time. Regional optometrists, Brien Holden Vision Institute and the Visiting Optometrists Scheme (VOS) often visit the areas we work in while we’re not there so we’ve formed strong collaborative relationships to ensure patients can be effectively co-managed… for example, I’ll see a patient with glaucoma and advise Kyriacos – or another visiting optometrist – who will check that patient’s eye pressure and so on.”
He said trusting, personal relationships are very important. “We’ve been working with these optometrists for a long time and so we trust them when they tell us what’s going on, and they feel comfortable calling us directly on our mobiles for advice.
New Website to Raise Glaucoma Awareness
Glaucoma Australia will launch a new website during World Glaucoma Week (12–18 March 2017) providing a ‘one stop glaucoma shop’ for people with glaucoma, their relatives and the healthcare professionals who care for them.
When glaucoma is diagnosed or suspected, education is important to enable patients to take ownership of their condition and become actively involved in all treatment and management decisions. Medication adherence rates in Australia are less than 50 per cent at one year after treatment initiation, reflecting the large numbers of people who either don’t realise treatment is for life or who don’t know enough to place their eyesight before other aspects of their daily life. An informed patient is usually a motivated patient and research by Glaucoma Australia has found that patients who know more about glaucoma have lower levels of anxiousness compared
Glaucoma Australia can assist people diagnosed with glaucoma to lead healthy active lives. Referring a patient to the organisation is the best way to amplify advice already given by a healthcare professional and can be done either via the website (www.glaucoma.org.au) or by using available patient information resources available. Your referral could make a world of difference to people recently diagnosed with glaucoma.
Working in Indigenous Communities
Dr. Agar said delivering eye services to indigenous communities presented unique challenges that his team “relishes” working to overcome, usually with assistance from an Aboriginal health worker.
“The Outback Eye Service is fortunate because it was established by Fred Hollows and so the people in Far Western New South Wales know we’re from Fred’s mob. Often you’ll find that Fred saw one of a community’s elders or he saw someone in a patient’s family and so a trust has formed.”
But while the barriers to working with Australia’s indigenous community are not as they once were, there are more subtle challenges, like working out how to get people along to the clinic on the appointed day or following them up.
“Koori time is different to western time so often we’ll give our Aboriginal patients a date for the clinic and they will turn up – or not. That might be because there is a Sorry Day or a funeral (sadly, funerals are more common than weddings). Our Aboriginal health workers are excellent at finding people and bringing them along to see us.”
He said the ongoing challenge is the tyranny of distance. “Often patients who require surgery don’t want to leave their community to travel to Sydney – it’s a challenge that many white people don’t understand. We counsel them and hope they change their mind.”
Dr. Agar told the story of a glaucoma patient recently seen by his colleague Kyriacos.
“The woman was 79-years old and for the past five years has had PXF ocular hypertension. She had been treated by laser and had been on drops. Following cataract surgery by our team in Bourke, she had experienced a pressure spike.
Kyriacos saw the woman and contacted us to advise of the pressure spike. We were able to see the patient within two weeks and although she had to travel to different ophthalmology clinics in Brewarrina and Bourke, we were able to stabilise the pressure.”
He said the case was nothing unique. “It happens all the time. Had Kyriacos not been present to examine her, the patient would not have been aware of the ocular hypertension and she would have eventually lost her sight. Instead she is functioning well and her vision is good.”
Dr. Agar refers glaucoma patients in remote Australia to two agencies for support, depending on their needs. Patients who are newly diagnosed with glaucoma, are taking drops or have a family history of glaucoma are directed to Glaucoma Australia for education and support.
People of all ages who have lost significant vision, are referred to Guide Dogs for on the ground assessment, advice on aids and mobility training.
“These two organisations provide essential services, especially to patients living in remote areas without a 24/7 health service,” he said.
World Glaucoma Week
World Glaucoma Week runs from 12–18 March 2017, providing an excellent opportunity for eye care professionals to educate patients about the risks of glaucoma and the need for