Macular Disease Foundation Australia 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.
The Foundation commissions annual research to identify awareness of macular disease within the community. The findings inform the Foundation's awareness and education campaigns. They also enable the Foundation to effectively represent the needs of the macular disease community to state and federal governments.
Key findings from the 2015 independent Galaxy survey:
- 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
- Of those aged 50+ who were aware that macular degeneration affects the eyes, 89% stated that they had a macula check in the last two years (up from 33% in 2007 and 69% in 2014).
- 47% of Australians ranked loss of sight as their number one health concern, ahead of loss of memory (37%), loss of limb (7%) and loss of hearing (4%).
- The top three areas of life most impacted by loss of vision were identified as driving (88%), reading (84%) and working (72%)
- One in four at risk still had not had their eyes tested and macula checked within the last two years.
Impact on patients and carers
In early 2013, Macular Disease Foundation Australia, 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, the Foundation surveyed clients regarding the costs associated with anti-VEGF treatment. This work will be of great benefit to guide the Foundation'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, the Foundation 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 the Foundation 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.
Macular Disease Foundation Australia produces a free annual research newsletter for members of the public.
Additionally, the Foundation produces free weekly research e-newsletters for professionals.