How often do you come across a patient who has a complete misunderstanding of an eye condition, or their risk of developing that eye condition, simply because they have misheard a diagnosis, misread the description of a disease, or simply haven’t pursued a regular and thorough eye check? As a consequence, they’ve lived in fear and dread, perhaps avoided seeking advice or treatment, or worse still, resigned themselves to living with blindness.
When seeing patients, it is often easy to feel disheartened by the communication blunders they share from their past experiences.
From one patient: “Well, I’ve been dreading this day when I’ve had to come back for another eye test. The last time I had an eye test, I was told my eyes were at risk for glaucoma, and, because glaucoma has no cure, I would eventually lose all my eyesight… So, please don’t check me for it, because if I have it, I’d rather NOT know I’m going to go blind…”
As a specialty contact lens optometrist, I often hear the following from patients with keratoconus (although also from patients with other ocular pathologies): “I was told there can be nothing done for my eyes and my vision, so I have resigned myself to accepting I am virtually blind.”
It is important to focus on the positive aspects
of the condition whenever possible, for example, macular degeneration only affects the middle part of your vision… it does not cause complete blindness
As eye health professionals, comments like this illustrate just how much we need to improve the way we communicate with our patients.
Dr. David Wechsler, a subspecialist in glaucoma, believes patient management must be holistic and practitioners must communicate comprehensive explanations to their patients. “As eyecare professionals that are managing chronic, long term conditions such as glaucoma, it’s not just about the pressure. Yet patients often think it is, because we talk about it every visit, measure it and report the pressure back to them. They then say, ‘what is a normal pressure’.
“I think it is very helpful to show patients the field printout, and disc photos and/or disc imaging. I often show them a picture of a healthy optic disc and then show their disc photo and point out where there has been nerve tissue loss,” he said.
Dr. Wechsler said it is essential to ensure patients have a thorough understanding of their eye condition. “I think it is vital for patients to understand what is going on because we often ask a lot of them, in terms of the drops we prescribe, and other interventions. These are ultimately for the patients’ benefit, but they have to be on board with what we are trying to achieve, otherwise there is a very real risk of non-compliance with treatment.”
Dr. Ridia Lim, also a glaucoma subspecialist, commonly deals with vision loss associated with glaucoma. She says personalised care that shows empathy is most important. “We must remember that we are treating a patient. A person, not just an eye, or a number, or a pressure, or a nerve or a field,” said Dr. Lim.
What I take from these insights is that we need to remember the way we communicate with our patients can have long-term ramifications on how well they understand their ocular condition, manage their treatment regime and on a broader scale, cope with the way it impacts day-to-day life.
Dr. Simon Chen, retinal ophthalmologist, vitreoretinal surgeon and laser cataract surgeon, has useful pointers for improving communication between patients and eyecare professionals. In the lead-up to Macular Degeneration Awareness Week (22–28 May) he says, “Always be mindful that a diagnosis of age related macular degeneration can be very upsetting and anxiety provoking. Elderly patients in particular often find it hard to understand and process what you tell them. Encourage patients to bring a trusted friend or relative to the consultation to help them remember and process what is said later, speak slowly and in plain language that the patient can understand.”
He said it is important to explain a diagnosis in a way that encourages patients to act to preserve their eyesight, emphasising proactive management rather than taking that moment to explain that macular degeneration is the leading cause of blindness in Australia.
Dr. Chen adds, “It is important to focus on the positive aspects of the condition whenever possible, for example, macular degeneration only affects the middle part of your vision and not the side vision so it does not cause complete blindness. You can highlight aspects of the condition that the patient can proactively control.”
Aspects such as diet, and minimisation of risk factors such as avoiding smoking, and monitoring vision with an Amsler grid, taking AREDS supplements, attending for appropriate follow up all need to be emphasised. These can have a huge effect on patients, their commitment to proactive disease management and therefore their ability to preserve their vision. In essence, patient empowerment is key.
Additionally, Dr. Chen points out, “Provide the patient with relevant written information whenever possible”, so that they can take time after the consultation to absorb what has been communicated with them.
When optometrists and ophthalmologists co-manage effectively, patients can benefit enormously.
Dr. Andrew White, who serves as the current chair of the Glaucoma Australia Expert Advisory Panel, is keen to explain, “Clear communication between referring optometrists and ophthalmologists is a cornerstone of holistic patient care and enables a consistent message to be presented to patients. This team approach gives patients confidence in their management and promotes compliance with treatment recommendations.”
However, although we all aspire to clear and effective communication between professions, in reality, across all aspects of communication in the management of chronic conditions such as macular degeneration and glaucoma, there is significant room for improvement. “Communication between optometrists and ophthalmologists is highly variable and often inadequate,” he said. “It is only with the free flow of information in a structured/semi-structured way that effective communication with regards to safe collaborative management of patients is possible. Without it, both groups exist in silos and the patient is the one who suffers.”
Glaucoma subspecialist Dr. Colin Clement agrees. “Outcomes are optimised when patients are confident in the knowledge that all health care providers are working towards the same goal. To this end, open and clear channels of communication between all providers is vital.”
In the ‘mipatient’ column this month, I present the case of two optometrists and three ophthalmologists collaborating to manage a post corneal graft, complex glaucoma, post central retinal vein occlusion, and contact lenses for a patient. With so many complex conditions coexisting, this is a great example of the importance of good communication between all eyecare professionals.
In terms of practical rules to guide communication, Dr. Simon Chen said information that ophthalmologists find particularly useful in optometric referral letters when co-managing age-related macular degeneration patients include current and previous visual acuity measurements, the duration of any symptoms, and which nutritional supplements, if any, have been recommended (specific brand and dose).
Additionally, spelling out expectations for the roles between the two co-managing health care professionals is important. “It can be helpful to specify if the referring optometrist is happy to continue monitoring the patient when they are stable, or if they prefer that the ophthalmologist take on this role,” said Dr. Chen.
Low Vision Support
Ongoing support is, of course, essential to achieving optimal disease management and patient quality of life, particularly when low vision enters the equation.
At the beginning of this article, I talked about patients who report feeling as if all hope is lost when diagnosed with an eye disease such as glaucoma or macular degeneration.
Addressing this point, Dr. Chen says, “be mindful of any relevant personal/social information that may impact on patient management – factors such as if there is significant patient anxiety, if the patient has early dementia, if he or she lives alone, or if they are still actively driving. For macular degeneration, in terms of future management of the patient, it is best to ensure that low vision aids have been discussed or trialled.”
There are several specialist organisations that patients can be referred to so they can access low vision support and services to maintain their quality of life, even as their vision declines. (refer to the breakout box for details).
In closing, we should be mindful that despite the progress we have made in treating sight threatening chronic ocular conditions – particularly macular degeneration and glaucoma – clear and effective communication with patients and colleagues – remains central to helping our patients retain or even improve their vision, their independence and quality of life.
Shocked: “I’ve Got Macular Degeneration”
Chris Smith, host of The Chris Smith Show on 2GB, wishes he’d made a point of returning to the same optometry practice for regular and thorough eye tests, especially after he noticed things around him were looking a little wobbly.
“I’d been having problems with my eyes for three or four years and assumed it was my prescription. Every year or so I’d drop into a different optometry practice, with my kids in tow, for an eye test,” he told me.
Chris said he was increasingly surprised to find his prescription remained pretty much the same yet with each new pair of spectacles, his vision didn’t improve.
Just ahead of Macular Degeneration Awareness Week in 2015, he attended a Specsavers event where his partner, Susie Burrell, was delivering a presentation on the relationship between nutrition and macular degeneration. Following the presentation, he and Susie were offered an eye test and retinal scan. Directly after, he was given the news.
“I’d done a lot of interviews about macular degeneration but I’d forgotten the details. As soon as they sat me down and gave me the diagnosis, I was shocked. And then all the details came back to me.
“I’m a fairly positive person and so I instantly thought it was time to pull my finger out and change my lifestyle. I threw out a stack of bad stuff from my diet. I have a few alcohol free days each week now and I have more vegetables and salad than I’ve ever had before. Instead of drinking freshly squeezed fruit juice on a Saturday morning, my new routine is to drink vegetable juice – beetroot juice, or kale and beetroot juice for example.
A year on, he says, “I don’t think my macular has gotten worse, in fact I’ve recently seen my ophthalmologist and he agrees. He said he’s very happy with the way things are.”
Chris said he finds the thought of going blind frightening. “You value your sight so much. I imagine I’d no longer feel part of the world… I didn’t like being in the dark as a kid… I couldn’t look out the window of bedroom at night because there was a shed there and in the dark I couldn’t see into it, I had to sleep facing the other way… the thought of permanently being surrounded by darkness is frightening.”
Aged 53 and the father of two children, 11 and 12 years, as well as twins, just three-months old, Chris says he has plenty of motivation to take care of his eyes going forward.
“I feel the responsibility to maintain my sight – and I know I’ve got so much to look forward to seeing as my kids grow up,” he said.
As if that isn’t enough, Chris said his eldest daughter is good at keeping him on the straight and narrow should he ever suggest going out to eat “something that’s not very nice”. And then there is his partner, the nutritionist… we think he’s in good hands.
Macular Degeneration Awareness Week 2016
Macular Degeneration Awareness Week takes place from 22–28 May. Contact the Foundation for free brochures and Amsler grids to distribute to your patients. Telephone: 1800 111 809. www.mdfoundation.com.au
Quantum RLV has been providing products and services to people with a print disability (low vision, blindness or a learning difficulty) for over 30 years. The company provides free patient consultations, provides free product brochures and works with practices to set up low vision displays for patient education.
T: (AUS) 1300 883 853
Royal Society for the Blind
The Royal Society for the Blind (RSB) offers orientation and mobility training, occupational therapy services and has print alternatives and a digital library. RSB also offers specialist services for children and youth aged 0–18 with low vision. A low vision centre is available to help people with significant vision loss to optimise use of their remaining vision.
Guide Dogs works to enhance the independence and safe mobility of people who are blind or vision impaired, and to ensure that vision loss will not limit independence. There are six state-based Guide Dogs organisations in Australia.
T: (AUS) 1800 484 333
Macular Disease Foundation Australia
Macular Disease Foundation Australia is committed to reducing the incidence and impact of macular disease in Australia through education and awareness programs, research, provision of support services and representing the best interests of the macular disease community. The Foundation has an information-packed website and can provide eye health professionals with comprehensive information booklets that can be handed to patients as part of the education process.
P: (AUS) 1800 111 709
Glaucoma Australia is the peak glaucoma awareness/education/support association in Australia. A registered, national, not-for-profit organisation, Glaucoma Australia’s mission is to eliminate glaucoma blindness.
P: (AUS) 1800 500 880
Margaret Lam graduated from the University of NSW in 2001 and started theeyecarecompany in 2005 and today has practices in greater Sydney and Sydney CBD. Margaret practises full scope optometry, but with a passionate interest in contact lenses, retail aspects of optometry and successful patient communication. She has extensive experience in specialty contact lens fitting in corneal ectasia, keratoconus and orthokeratology, and has been a past recipient of the Neville Fulthorpe Award for Clinical Excellence.