Macular Disease Foundation Australia has launched Eye Connect, the first comprehensive community service that offers people living with Australia’s leading cause of blindness access to a range of evidence-based support outside the eye care clinic.
According to studies, only 56% of patients with macular disease recall receiving a clear diagnosis, including the name of their condition.1 Eye Connect has been developed with this in mind. It bridges the information gap between clinical appointments by offering patients tailored health information, as well as practical and emotional support, to help them live well with macular disease.
The free Eye Connect service has been developed based on insights from a neovascular age-related macular degeneration (nAMD) pilot program and extensive research involving people with macular disease, carers, ophthalmologists, and optometrists.
Feedback from those involved revealed the need for more practical and emotional support throughout the treatment and disease journey, beyond what might be received in appointments.
Feedback from the people who participated in the Eye Connect pilot program has been very positive…
Macular Disease Foundation Australia’s new service was initially known as My Eyes; however, the Foundation has changed the name of the service to Eye Connect as it believes ‘connection’ is vital for improving health outcomes for people living with macular disease.
“Evidence tells us that there is a real need for services that connect people with the information and support they need in between appointments with their eye care professional,” said Dr Kathy Chapman, CEO, Macular Disease Foundation Australia.
“Eye Connect gives people the tools to navigate their macular disease journey more effectively, particularly from a practical and emotional perspective because we know how important this is to them.
“Feedback from the people who participated in the Eye Connect pilot program has been very positive, so we have every confidence that the service will greatly benefit people with macular disease and support eye care professionals to generate better health outcomes for their patients.”
Three Areas of Support
Eye Connect focusses on three areas of support:
Health information: patients are provided with evidence-based information about macular disease, and non-clinical support services to help them confidently manage their condition.
Practical advice: Tips and guidance on things like nutrition for healthy eyes, immediate care after their appointments, daily living with reduced or low vision, and transport advice.
Emotional support: For some, a diagnosis of macular disease – or living with an eye condition – can be a difficult time. The Eye Connect team can help patients manage some of the worries and concerns they may have about their diagnosis and treatment.
Eye Connect can also link patients to peer support where they can connect with trained volunteers and other people also living with macular disease.
Dr Chapman encouraged the ophthalmic community to … “help generate knowledge of Eye Connect and how it can support people living with Australia’s leading cause of blindness”.
How to Refer
Macular Disease Foundation Australia has produced a new community service video for eye care professionals, available from the Foundation’s website.
Dr Chapman encouraged the ophthalmic community to “share the video far and wide to help generate knowledge of Eye Connect and how it can support people living with Australia’s leading cause of blindness”.
While Eye Connect is currently available to patients living with all stages of age-related macular degeneration, the service will be expanded to support other macular conditions in the future.
To refer your patients or watch the Foundation’s video, visit mdfoundation.com.au/healthprofessional/refer-to-eyeconnect. Eye health professionals can also refer via Oculo or call Macular Disease Foundation Australia on (AUS) 1800 111 709. Patients can self-refer via the Foundation’s website or over the phone.
Key Patient Statistics
• Less than half (45%) of patients recall receiving an explanation of what may happen to their vision in the future.1
• 58% of patients were unable to recall receiving any lifestyle modification advice from their eye care professional.2
• People who require eye injections don’t always understand they are a life-long commitment and are reluctant to ask their health practitioner for further information.3
References
1. Clinton, S., Hoad, G., Tucker, S., et al., Comparing views of patients and eye care professionals on the information provided on age-related macular degeneration and diabetic macular oedema. Eye (Lond). 2024 Jun;38(8):1591–1593. DOI: 10.1038/s41433-024-02939-z.
2. Dave, S., Binns, A., Vinuela-Navarro, V., Callaghan, T., What advice is currently given to patients with age-related macular degeneration (AMD) by eyecare practitioners, and how effective is it at bringing about a change in lifestyle? A systematic review. Nutrients. 2022 Nov 3;14(21):4652. DOI: 10.3390/nu14214652.
3. Talks, S.J., Daien, V., Finger, R.P., et al., The patient voice in neovascular age-related macular degeneration: Findings from a qualitative study. Ophthalmol Ther. 2023 Feb;12(1):561–575. DOI: 10.1007/s40123-022-00631-7.
