Social Impact Survey 2: What did your patients tell us?

Macular Disease Foundation Australia (MDFA) is committed to understanding the impact of macular disease on the lives and health of people who live with the condition. One of the ways we do this is through our Social Impact research.

The surveys help us identify new ways we can support people living with macular disease, and also help inform our advocacy activities and research priorities.

Our second survey, launched in 2023, focussed on mental health, barriers to persisting with anti-VEGF injections, concerns about falling, and areas of advocacy patients consider MDFA should act on.

Almost 2,000 people living with macular disease participated in our survey. An amazing response.

When it comes to anti-VEGF eye injections, 3% of people with neovascular AMD said they were not having injections, even though they were recommended. About 10% of people said the reason for not having injections was because of the cost of treatment. Unsurprisingly, the costs associated with anti-VEGF injections were consistently named as an area of advocacy by respondents.

‘The injections are far too expensive but I always find the money. Because my eyesight is so very, very important to me.’ stated one survey participant.

Macular disease and the loss of vision can carry a high emotional burden and affect quality of life. It can also affect those around you. More than 15% of people told us they had been diagnosed with a mental wellbeing problem, with 1 in 5 people receiving support for their mental wellbeing.

These survey findings reinforced the need for comprehensive, supportive, and holistic care for people living with macular disease, especially considering the number of people experiencing mental health issues and lowered quality of life.

The insights we have obtained through the Social Impact Surveys have now informed our new support service called My Eyes, which will launch this May.

My Eyes is a personalised service to help support your patients between visits to you. Individuals will receive tailored support, information and resources, as well as regular phone calls to check how you’re going and answer any questions. We want your patients to have the confidence to overcome any challenges they might be facing. My Eyes is completely free and for all Australians, no matter where they live. Visit http://3.27.170.16/support-me/my-eyes/ to learn more and refer your patients via Oculo or our website.