Macular Disease Foundation Australia (MDFA) undertakes, commissions and translates important research relating to macular diseases. This research explores issues including awareness of macular diseases, risk factors, current treatments and the impact of macular diseases on patients, families and carers as well as the economy.
MDFA commissions annual research to identify awareness of macular disease within the community. The findings inform the MDFA's awareness and education campaigns. They also enable MDFA to effectively represent the needs of the macular disease community to state and federal governments.
Key findings from the two YouGov Galaxy 2019 surveys which targeted both the general population and Australians with AMD include:
- 63 per cent of the general population don’t know there’s a familial risk associated with AMD
- Among Australians diagnosed with AMD, only half (50.1 per cent) 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 per cent) have not told all relevant family members they may be at risk themselves; and
- Only one in three (33.2 per cent) of those with AMD recalled being informed about the potential familial risk by their eye health professional.
Impact on patients and carers
In early 2013, MDFA, with funding support from Bayer, conducted a major survey of 1,000 people with wet age-related macular degeneration and 1,000 carers of people with wet age-related macular degeneration, demonstrating the significant ripple effect of macular degeneration. The results have been published in two peer-reviewed journal articles and are summarised in The Ripple Effect of Vision Loss.
Cost of treatment
In 2015 and 2019, MDFA surveyed clients regarding the costs associated with anti-VEGF treatment. This work will be of great benefit to guide the MDFA's advocacy efforts to ensure the ongoing affordability of treatment. This survey also influenced a new factsheet that has been developed to help explain the treatment costs, PBS and Medicare reimbursement and strategies for people experiencing financial difficulties.
Barriers to treatment
In 2011 and 2019, MDFA undertook a detailed survey of clients regarding their treatment costs as well as the barriers they experience in undergoing treatment. This research has proven to be of great value in our education and advocacy efforts to ensure the ongoing affordability and accessibility of treatment.
A critical role of MDFA is to translate the latest, typically complex, research on macular disease into key messages to encourage changes in behaviour to reduce risk, seek early diagnosis, treatment or rehabilitation. Research is also translated into understandable language so that clients can understand a diagnosis and maintain an appropriate degree of hope for the future.
MDFA produces a free annual research newsletter for members of the public.
Additionally, MDFA produces free weekly research e-newsletters for professionals.