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HomemieyecareMy Eyes: Australia’s First AMD Patient Support Service

My Eyes: Australia’s First AMD Patient Support Service

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

  1. 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
  2. Data on file from Macular Disease Foundation Australia My Eyes pilot program, conducted 2021 to 2023.
  3. 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.  
  4. 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.