The new My Eyes service from Macular Disease Foundation Australia (MDFA), launching as part of Macula Month, is the first support service to enhance health outcomes for anyone living with age-related macular degeneration. My Eyes offers education, resources, and emotional support aimed at enhancing treatment adherence, fostering better self-management, and ultimately improving overall wellbeing.
Over the past three years, MDFA has been developing and piloting its new patient support service, My Eyes, consulting extensively with people living with age-related macular degeneration (AMD), their carers, and eye health professionals.
While people report receiving high quality care in the clinic setting, our consultations show there is an opportunity for MDFA to step in and provide more support and guidance between visits with health professionals. We learned that only 56% of patients recall receiving a clear diagnosis, including the name of their condition. In addition, less than half (45%) of patients recall receiving an explanation of what may happen to their vision in the future.1
Another key learning from our consultations was that a person’s needs and experiences when living with AMD change over time, so there was a role for MDFA to provide different support at different times over a longer period.
The My Eyes service has been designed to provide tailored and personalised support to individuals with AMD at various stages of their journey. It is an opt-in service for people living with any form of AMD. In time, MDFA will expand the scope to include diabetic eye disease and other retinal eye conditions.
Connecting patients to the My Eyes service not only provides them with care and support beyond your clinic. It also allows them to feel confident in managing their AMD, increasing the likelihood of improved vision outcomes.
THE EVIDENCE BEHIND MY EYES
The evidence behind patient support programs is strong.
In 2022, 100% of active neovascular AMD patients involved in an MDFA pilot support program adhered to, or recommenced, their eye injections following MDFA initiated support or interventions.2
In addition, a recent SmartSight study found that after two years, people who enrolled in a patient support program were more likely to continue eye injection treatment than those who did not enrol (88% vs 64% p<0.05).3 Participating patients in the SmartSight study also felt more positive about their condition and treatment.
The feedback we have received about My Eyes has been overwhelmingly positive from early adopters.
UNDERSTANDING THE HUMAN IMPACT
MDFA has always been 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 have done this is through our Social Impact research.
Almost 2,000 people living with macular disease participated in our second survey,4 which was launched in 2023. This survey focussed on mental health, barriers to persisting with anti-VEGF injections, concerns about falling, and low vision aids and technology. Some key learnings included:
- 3% of people with neovascular AMD said they were not having injections, even though they were recommended.
- 10% of people said the reason for not having injections was because of the cost of treatment.
- 70% of people told us they believe that low vision aids and/or assistive technologies are beneficial. However, many respondents struggled to understand what technology was available to them, and many found devices cost prohibitive.
- Our research highlighted the high emotional burden of macular disease, to both the patient and family. More than 15% of respondents told us they had been diagnosed with a mental wellbeing problem, with one in five requiring 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.
THREE KEY AREAS OF SUPPORT
My Eyes is free of charge, independent and endorsed by Australia’s leading eye health professionals. The program focusses on three key areas of support:
- Health information. Evidence-based information about macular disease and non-clinical support services to confidently manage AMD.
- Practical advice. Tips and guidance on things like nutrition for healthy eyes, immediate care post-appointment for those receiving eye injections, daily living with reduced or low vision, and even travel tips.
- Emotional support. Management of some of the worries and concerns about the diagnosis and treatment through the My Eyes team, plus options to connect with peer support.
You can connect your patients to My Eyes via Oculo or the MDFA website. To learn more about the My Eyes service, visit: mdfoundation.com.au/refer-to-myeyes.
*Names changed for patient anonymity.
Meera Chandra BVisSc MOptom MPH is the Healthcare Relations Manager at Macular Disease Foundation Australia.
References
- Clinton, S., Hoad, G., Bloomfield, P., et al., Comparing views of patients and eye care professionals on the information provided on age-related macular degeneration and diabetic macular oedema. Eye (2024). DOI: 10.1038/ s41433-024-02939-z
- Data on file from Macular Disease Foundation Australia My Eyes pilot program, conducted 2021 to 2023.
- Chang, A., Stokes, J., Priestman, L., et al., Impact of a patient support program on patient beliefs about neovascular age-related macular degeneration and persistence to anti-vascular endothelial growth factor therapy. Patient Preferences and Adherence. 2021 Mar 3;15:511-521. DOI: 10.2147/PPA.S293941.
- Data on file from Macular Disease Foundation Australia survey conducted in 2023
How Does My Eyes Help Patients?
After your AMD patient is referred to My Eyes, the service starts with a phone call from a qualified MDFA team member. We’ll ask about your patient’s condition and answer any immediate non-clinical questions they have.
Once they opt in, your patient will then receive a welcome pack, customised to their condition, level of vision, and whether or not they are receiving intravitreal injections. They will receive a handy folder to store the information in.
The MDFA team will call your patient four weeks later to check in and hear how they are going. We’ll also capture responses to questions based on a validated screening tool designed to better understand each person’s experience of living with AMD, to help further customise their My Eyes journey. After the call, we’ll dispatch their next pack of tailored content by mail or email, according to their preference. The information provided in the My Eyes service includes videos, fact sheets, and brochures to keep content engaging and relevant.
We’ll continue to make contact with your patient around once a month with information and check in calls on topics designed to support them to live well with macular disease.
At the six-month mark, we will reassess the My Eyes pathway to see whether they need any changes. And of course, your patient can opt-out of the My Eyes service if they decide it’s not for them.
The My Eyes service, like all MDFA’s services, is free of charge, so we hope you will refer your patient for the best out-of-clinic support.
