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HomeminewsMacular Disease: Reducing the Burden

Macular Disease: Reducing the Burden

“Have you checked my macula?” At least one patient every day asks me if I have, or will check their macula. I reassure them that every eye examination involves checking their macula. I show them their digital retinal images and optical coherence tomography (OCT), and even then, at the end of the examination, I’m often asked, “So I don’t have macular degeneration?”

I believe every primary eye care practitioner regularly has patients proactively ask for a macula check. This, I’m sure, highlights that the general public have become much more familiar with the terms, ‘macula’ and ‘macular degeneration’.

every patient knows someone – a parent, relative, neighbour, or friend – living with age-related macular degeneration

A survey undertaken by Macular Disease Foundation Australia (MDFA) in 2015 found 74% of those polled aged 16+ were aware that macular degeneration affects the eyes (up from 32% in 2007). This figure rose to 85% for people aged 50+, the main risk group.1 In 2018, the Foundation’s survey found the number of Australians aged over 50 who were aware of having their macula checked in the past two years had risen from one in three in 2007 to two in three in 2018.

This high level of awareness of age-related macular degeneration (AMD) is likely due to years of work by MDFA to promote AMD prevention and early intervention messages.

But it’s probably also due to the fact that nearly every patient knows someone – a parent, relative, neighbour, or friend – living with AMD. They know it is a life changing and complex disease, but often that’s as far as their knowledge extends. Because despite macular disease being the leading cause of blindness in Australia, 91% of Australians are unsure or unaware of the function of the macula.2 Furthemore, almost a quarter (23%) of Australians aged 50 and over don’t know what to do to reduce the risk of macular disease.2

It is our role as clinicians to help our patients understand more about AMD and other diseases of the macula – the risks and preventative measures, the diagnosis itself, and management strategies employed.

PREVALENCE OF AMD

AMD is a leading cause of irreversible blindness among older Australians. In 2018, MDFA found that one in seven (1.29 million) Australians over the age of 50 have some evidence of the disease.2 A 2017 publication estimated the prevalence of AMD to be 11.1% of non-indigenous and 1.1% of indigenous Australians.3 The incidence is set to rise with our ageing population, as the risk of developing AMD increases exponentially with age. Yet, it isn’t only older Australians who suffer from macular diseases.

Diabetes can affect people of all ages and can cause macular disease. Best disease, Stargardt disease and Sorsby fundus dystrophy are examples of inherited forms of macular disease (macular dystrophy) which can affect younger people.

DIRECT AND INDIRECT COSTS

Vision disorders come at significant cost to both the economy and the individual. Independent economic analysis undertaken by Access Economics completed in 2009 estimated the total financial cost of vision loss to be AU$16.6 billion per annum in Australia (excluding the indirect cost of presbyopia) and $2.8 billion in New Zealand.5 Diseases of the macula in general, present several direct and indirect costs.

Direct financial costs comprise the costs of running hospitals and nursing homes, general practitioner and specialist services funded through Medicare and patient contributions, the cost of prescribed and over the counter pharmaceuticals, optometry and allied health services, research and ‘other’ direct costs (such as health administration).4

Indirect costs include patients’ loss of wellbeing, aids, modifications, and other health costs associated with, for example, the earlier need for aged care, lost productivity, the risk of falls and consequent hip fractures, depression and premature death.4

Studies have shown that AMD poses a significant financial burden. In 2010, the total cost of vision loss associated with AMD alone was estimated at $5.15 billion, of which the direct cost was $748.4 million ($6,982 per person)5 for services that included appointments along the referral pathway, ongoing management, and treatment(s) required.

The success of collaborative care can only be achieved through strong relationships between optometrists and ophthalmologists

AMD also decreases a person’s quality and length of life,6 with increasing morbidity, further adding to costs for the individual and the economy. The MDFA’s Ripple Effect of Vision Loss Research showed that 85% of AMD patients surveyed lived with other health conditions including arthritis (47%), heart disease (25%), diabetes (12%), cancer (10%), depression (9%), obesity (5%), and Alzheimer’s or dementia (1%).7

Data has shown that patients with visual impairment from macular disease have an increased likelihood of using institutionalised aged care facilities, as well as higher use of social services.6 While it is well known that older people are more at risk of falls, many studies have established that there is an even higher risk of falls in the elderly with vision loss, which in turn can cause injuries and additional health expenditures.

Indeed, AMD is the most common ophthalmic disease related to falls in senior patients alongside glaucoma.8

A study led by Professor Joanne Wood at Queensland University of Technology, found that among older adults with AMD, increased visual impairment was significantly associated with an increased incidence of falls and other injuries. Reduced contrast sensitivity was significantly associated with increased rates of falls, injurious falls and injuries, while reduced visual acuity was only associated with increased falls risk. These findings have important implications for the assessment of visually impaired older adults.9

For patients with mild and moderate AMD, the odds ratio for falls and subsequent hip fractures is 1.83, and for severe AMD, the odds ratio for falls and subsequent hip fractures is 3.95.6

MACULAR DISEASE AND DEPRESSION

It is estimated that one third of older adults with vision loss report clinically significant symptoms of depression.8 This isn’t surprising, as 47% of Australians ranked vision loss as the number one health concern, ahead of memory loss (37%), hearing loss (4%) and loss of a limb (7%) in the 2015 Galaxy survey commissioned by the MDFA.1 This survey found that people were most concerned about losing the ability to drive, read, and work as a consequence of vision loss.

Several factors can influence a patient’s susceptibility to depression. These include a change in self-image, social isolation, loss of independence, embarrassment, fear of falling, and co-existing chronic illnesses.10 Patients themselves may not recognise that they have developed anxiety or depression, and if they do, they often do not seek help for a variety of reasons. It can impact many different aspects of their lives, and interfere with treatment compliance and willingness to participate in rehabilitation programs designed to improve independence and quality of life.10

Signs of mental health problems can include increasing social isolation and withdrawal from regular leisure activities, as well as frequent negative statements about life in general.10 Other indicators include poorer than normal concentration, weight change, a loss in appetite, difficulty sleeping or lethargy.

Primary eye care practitioners who are able to recognise signs and symptoms of depression, and feel comfortable discussing these with their patients, are able to facilitate earlier treatment and improve outcomes. Collaboration with the patient’s GP, who is best equipped to assess and manage the patient’s mental wellbeing, can be vital.10

EMPLOYMENT

AMD mainly affects our older population, who are often retired, hence there are very few employment impacts. However, the employment opportunities of family members can be impacted as children are increasingly relied on to accompany AMD patients to medical and other appointments, and eventually to take on the role as carer.

Macular diseases that affect younger people, such as diabetic eye disease and macular dystrophies, can significantly impact long term employment and their capacity to earn an income. As the macular disease inevitably progresses, patients will require more assistance. With worsening impairment comes an increased need for carers, as well as an increased dependence and reliance on visual aids and building modifications in the home and/or working environments.6 All of these come at significant cost at a time when the patient can least afford it.

SHARING THE CARE

Faced with an ageing population, we as primary eye care professionals, are at the frontline of identifying and diagnosing macular disease. It is our role to distinguish between patients with early stages of AMD – that is drusen and/or pigmentary changes, which only require regular at home and in practice monitoring – and patients who have advancing disease and require urgent referral.

The increased availability of technology, such as digital retinal imaging, fundus auto fluorescence imaging and optical coherence tomography (OCT) in optometry practices, has empowered us to do this, and to be accurate with our diagnoses and triage urgency of referrals. However, according to ophthalmologists, this cutting edge technology has also led to an increased number of patients who have been over diagnosed and unnecessarily referred to their care.11 This is exceptionally frustrating for all involved; the referring optometrist, the ophthalmologist and most importantly the patient. The additional costs of care as well as the time away from work and other commitments is all for nothing if optometrists are incorrectly over diagnosing patients.

I always give out Amsler grids and reiterate, at every appointment, the importance of at home monitoring

For optometrists, I believe one of the biggest advantages of OCT technology is its ability to record and measure change. In my practice we use the Heidelberg Spectralis OCT, which enables us to pick up early macular changes and monitor them at appropriate intervals to discern whether changes are active or longstanding. Strong relationships with retinal specialists enable us to seek their guidance if need be.

Technology is also great for patient education. Digital macular imaging, fundus autofluorescence and OCT have allowed me to tackle patient questions about macular disease better than ever before. I can easily show a patient where their macula is, and show them comparative images of healthy and diseased maculae to allow them to forge a better understanding of their condition.

Surveys have found that younger optometrists, in particular, were less likely to enquire about patients’ smoking habits, and only two thirds of optometrists counselled their patients on diet and nutrition.12 The use of technology in the consultation room helps open up conversations about modifiable risk factors; such as good health, quitting smoking, and the importance of good, regular eye examinations.

Encouraging continuity of care, regular eye examinations, and monitoring changes is imperative for patients who live with a macular disease. I always give out Amsler grids and reiterate, at every appointment, the importance of at home monitoring and the appropriate action to take should their vision change. While there are now more modern methods than an Amsler grid available, such as an equivalent chart on a smartphone, the grid network of bathroom tiles or spreadsheets at work – in my opinion, it doesn’t matter. All that really counts is that our patients at risk of macular disease are monocularly testing their vision daily… and if they perceive any change to their central vision, they understand how critical and urgent it is to seek the care of an eye care professional.

Vision Disorders, Vision Loss and Blindness

In a 2014-15 National Health Survey, more than 12 million Australians (55% of the population) self-reported at least one long term vision disorder.13 

After adjusting for differences in the age structure of the population, vision disorders were more common among females (59%) than males (51%). The most common long-term vision disorders were long-sightedness and short-sightedness, with one in four Australians reporting each condition. About 421,000 Australians (1.8% of the population) had a cataract, 236,000 (1.0%) had macular degeneration, and 129,000 (0.6%) had complete or partial blindness.13 

According to Access Economics, the majority of vision loss (59%) was caused by uncorrected refractive error (excluding presbyopia). Cataract caused 15% of vision loss, age-related macular degeneration (AMD) 10%, glaucoma 5% and diabetic retinopathy (DR) 2%.5 

The major cause of blindness was AMD (50%), followed by glaucoma (16%) and cataract (12%).5 

With demographic ageing, the numbers are rising and by 2020, it is predicted that almost 801,000 people in Australia aged 40 or over will have vision loss and 102,750 will be blind. Almost 90,000 are expected to have presbyopia by 2020.4

REDUCE THE BURDEN

Can we as optometrists help reduce the burden of macular disease for our patients?

Education is the key to assisting macular disease patients and in managing the psychological impact of vision loss.

Handouts that detail the treatment plan, potential costs entailed and frequency of visits for treatment are beneficial, and are often provided by the treating ophthalmologist.11 However it is our role, as primary eye care professionals, to support the care of ophthalmology by filling in the gaps with appropriate patient education and ongoing careful monitoring of their eye health.

Through the success of intravitreal injections for wet AMD, ophthalmology has transformed the futures of countless patients. Most retinal specialists now use the treat and extend regime for injection treatment, and all take a long term approach to treatment. Despite this, our patients with wet AMD still need our services. Even after they have been referred to the ophthalmologist and are receiving regular injections, we can continue to provide advice and counselling to our macular disease patients. We can remind them that regular injections are necessary, we can reassure them that they are not going to be totally blind, and we can even be a set of ears to listen to their concerns.

In the case of earlier stages of AMD and late stage dry AMD, the news is not so positive as there are currently no treatments available. As optometrists, we can provide our patients with advice on diet and nutrition and we can direct them to valuable support services.

MDFA provides education seminars for the public, offers comprehensive brochures about all aspects of macular diseases including risks, prevention strategies, treatments, and tips for living with low vision. MDFA also supports individual patients and their families through its helpline (AUS) 1800 111 709.

Vision Australia and Guide Dogs Australia are able to assist patients with low vision assessments, as well as advice and training on aids and services that will help them maintain their independence and quality of life.

We must remember: there is so much we can do to help our macular disease patients!

CONCLUSION

We want our patients to realise that optometry goes beyond glasses and contact lenses, and extends to helping people maintain good vision for life.

Providing them with accurate, practical information and carefully choosing our language when counselling patients can have a huge effect on the way they perceive macular disease, their risks of disease, and their approach to monitoring and management. By reinforcing the need for our patients to follow dietary recommendations for ocular health and, when appropriate, take their daily supplements, we can give our patients a sense of control over their macular condition. And last but not least, by encouraging our patients to remain social, physically active, and keep up with their hobbies, we can ensure that people with late stage macular disease don’t feel defined by their condition… and hopefully, they will be less likely to fall into the depths of anxiety and depression.

Dianne Pyliotis completed a Bachelor of Optometry/Bachelor of Science at the University of New South Wales in 2013 with first class honours. Immediately after graduating she began practicing at Eyewear Youwear in Surry Hills NSW, where she continues to work today. 

References: 

  1. www.mdfoundation.com.au/content/foundation-research
  2. Awareness of macular disease’, study conducted by YouGov Galaxy, commissioned by Macular Disease Foundation Australia between 1 and 4 March, 2018, comprising 1,020 Australians aged 18 years and older. 
  3. Keel S, Xie J, Foreman J, et al. Prevalence of Age-Related Macular Degeneration in Australia The Australia National Eye Health Survey. JAMA Ophthal. 2017; 135(11):1242-49. 
  4. Clear Focus. The economic impact of vision loss in Australia in 2009. A report prepared for Vision 2020 Australia by Access Economics Pty Ltd. June 2010. 
  5. Eyes on the future – A clear outlook on age-related macular degeneration. Report by Deloitte Access Economics and Macular Degeneration Foundation. 2011 
  6. Eye Research Australia. The economic impact and cost of vision loss in Australia. 2004. http://old.cera.org.au/ uploads/CERA_clearinsight.pdf 
  7. Ripple effect of vision loss. 2013. www.mdfoundation. com.au/content/ripple-effect-vision-loss# 
  8. Carla N. Urata, Livia S. Mazzoli, and Niro Kasahara. A Comparative Analysis of the Fear of Falling Between Glaucoma and Age-Related Macular Degeneration Patients From a Developing Country. Translational Science and Vision Technology. 2018 Sep; 7(5): 17. https://www.ncbi. nlm.nih.gov/pmc/articles/PMC6166891/ 
  9. Wood, J.M., Lacherez, P., Black, A.A., Cole, M.H., Boon, M.Y., & Kerr, G.K. (2011) Risk of falls, injurious falls, and other injuries resulting from visual impairment among older adults with age-related macular degeneration. Investigative Ophthalmology & Visual Science, 52(8), pp. 5088-5092. https://eprints.qut.edu.au/43844/
  10. Depression: The dark side of vision loss. 25th May 2015. mivision. www.mivision.com.au/2015/05/depressionthe- dark-side-of-vision-loss/
  11. Macular Degeneration: Navigating the patient pathway. 29th April 2014. mivision. www.mivision.com.au/2014/04/ macular-degeneration-navigating-the-patient-pathway/ 
  12. Translating Age-related macular degeneration research into practice. 30 April 2015. mivision. www.mivision.com. au/2015/04/translating-age-related-macular-degenerationresearch- into-practice/ 
  13. Australian Institute of Health and Welfare 2016. Australia’s health 2016. Australia’s health series no. 15. Cat. no. AUS 199. Canberra: AIHW. 3.15 Vision hearing and disorders. www.aihw.gov.au/getmedia/48ee92a8- d373-4354-8df2-d664a974034f/ah16-3-15-vision-hearingdisorders. pdf.aspx 

Patient Support Services

  • Macular Disease Foundation Australia: www.mdfoundation.com.au or (AUS) 1800 111 709 
  • Vision Australia: www.visionaustralia.org or (AUS) 1300 84 74 66 
  • Guide Dogs Australia: www.guidedogsaustralia.com or (AUS) 1800 484 333