Confronted by “alarming” statistics that reveal a lack of community awareness about macular disease risk factors, Macular Disease Foundation Australia (MDFA) CEO Dee Hopkins has committed to working closely with eye health professionals to improve patient communication.
To coincide with Macula Month, which runs throughout May, MDFA commissioned two YouGov Galaxy surveys targeting both the general population and Australians with AMD. They showed that:
• 63% of the general population don’t know there’s a familial risk associated with AMD,
• Among Australians diagnosed with AMD, only half (50.1%) are aware of the hereditary connection – of those, many dramatically underestimate the risk,
• Of the people who do understand the familial connection, almost one third (29%) have not told all relevant family members they may be at risk themselves, and
• Only one in three (33.2%) of those with AMD recalled being informed about the potential familial risk by their eye health professional.
Only one in three (33.2%) of those with AMD recalled being informed about the potential familial risk by their eye health professional
Ms Hopkins said the statistics were alarming – both for the community generally, and for eye health professionals.
“Familial risk is crucial information and we’ll be working closely with eye health professionals on ways to better communicate this to their patients. Early detection is vital to help slow progression of the disease.”
MDFA Patron Ita Buttrose AO OBE, urged members of the community to start talking more about AMD and its associated risks.
“People with siblings or parents with AMD are in a high-risk category and have a 50% chance of getting the disease,” Ms Buttrose said. “The best defence against vision loss from AMD are awareness and early detection.”
“From my experience as MDFA Patron, I know that people living with macular disease are extraordinarily stoic. They know their sight loss places a burden on their loved ones. I suspect many people with AMD don’t talk about the risk because they don’t want the people they love to worry.
“But we must start talking about how this disease can run in families,” Ms Buttrose said. “My father had AMD. Two of his siblings were diagnosed with it. I’m at risk, which is why I am proactive about my eye health.”
Dee Hopkins agreed. “The conversation needs to start with our families. Know your risk: a family history is a risk; age is a risk; smoking is a risk, but early action can save your sight,” she said.
AMD accounts for 50% of all cases of blindness and severe vision loss in Australia.* One in seven Australians over the age of 50 – almost 1.3 million people – already have some evidence of AMD.
* Eyes on the future – a clear outlook on age-related macular degeneration Report by Deloitte Access Economics & Macular Degeneration Foundation, 2011. (2018 prevalence estimates are derived from a straight line extrapolation between 2015 and 2020 estimates in this report.); Taylor H et al. ‘Vision Loss in Australia’ MJA 2005;182:565-568.
ABOUT THE SURVEY
Two studies were conducted by YouGov Galaxy: a national survey of 1,000 Australians, and a second national survey of 653 Australians who have AMD.