For many people diagnosed with age-related macular degeneration (AMD) and diabetes-related eye conditions, the clinical pathway is clear. The lived experience is not. Between appointments, patients are often left to process complex information, manage anxiety about vision loss, and navigate practical changes to daily life with limited support. In 2024, Macular Disease Foundation Australia (MDFA) launched Eye Connect to address this gap. Victoria Heaton provides an update on the evolution of the service.

WRITER Victoria Heaton

Designed as a free, tailored support service for people at any stage of AMD, diabetic retinopathy or diabetic macular oedema (DMO), Eye Connect brings together disease education, practical guidance, and psychosocial support delivered by trained staff with eye health qualifications and experience.

Two formal reviews – an implementation evaluation in 2024 and a six-month impact evaluation conducted in 2025 with the University of New South Wales School of Optometry and Vision Science – provide evidence that structured, non-clinical support can positively influence treatment persistence, health literacy, and emotional wellbeing.

IMPROVING HEALTH LITERACY AND SELF-EFFICACY

Health literacy remains a continual challenge in AMD care. Published literature shows that only 56% of people with AMD recall receiving a clear diagnosis, including the name of their condition. Fewer than half recall receiving an explanation of future vision implications.1 MDFA’s social impact surveys have also found that one in three people live with another eye condition, and one in five report a comorbidity that makes self-management harder.2

In the six-month impact evaluation,3 statistically significant improvements were observed in participants’ perceived understanding of AMD. Among those who completed a cross-sectional intra-program survey:

• 81% said they had a better understanding of their AMD and its effects, and

• 79% agreed they could talk about their AMD with others, including health professionals and family.

Improved understanding translated into perceived control. After six months, participants reported feeling more in control of their condition and less affected by it in daily life.

For eye care providers, this has tangible implications. Patients who understand their diagnosis and treatment protocol are more likely to engage in shared decision making, attend follow-up appointments, and raise concerns early. Eye Connect’s structured reinforcement between visits appears to strengthen these behaviours.

PRACTICAL SUPPORT THAT REDUCES DAY-TO-DAY BURDEN

Three-quarters (75%) of respondents in MDFA’s social impact survey reported that macular disease impacted daily functioning, with around one in six reporting high impact.4

Eye Connect addresses these impacts through tailored advice provided in accessible formats. Participants described practical benefits and solutions, such as improved lighting strategies, sun protection, navigating changes in driving eligibility, and confidence in self-advocacy. These are non-clinical outcomes, but they have a clear impact on independence and wellbeing.

ADDRESSING TREATMENT PERSISTENCE

Real-world data shows that treatment attrition remains a significant challenge. Pharmaceutical Benefits Scheme (PBS) data indicate that approximately 20% of patients discontinue intravitreal injections within the first year, rising to 50% by five years.5 A 2024 study also demonstrated that clinicians may overestimate the degree to which patients perceive injections as necessary and underestimate ongoing treatment anxiety.6

Eye Connect was designed to achieve improvements in treatment persistence.

As part of the impact evaluation, Eye Connect participants enrolled for more than six months were surveyed. Of those receiving intravitreal injections, 95% reported maintaining their recommended treatment schedule while in the service. Additionally, 73% agreed they felt more positive about their injection therapy.

While self-reported, these findings suggest that structured education, regular check-in calls, and practical information about the injection process can influence emotional readiness for ongoing therapy. For patients who may leave the clinic with unvoiced questions or concerns, having a consistent, knowledgeable contact outside the appointment cycle reduces uncertainty and reinforces adherence.

PSYCHOSOCIAL SUPPORT AND EMOTIONAL OUTCOMES

“ It’s a good opportunity to clarify existing knowledge and reinforce key lifestyle points in slowing down the progression of my macular degeneration. I've transitioned from a place of not knowing anything to understanding my condition very clearly now. I am glad I joined this program.  ”

Margaret, Eye Connect participant

Anxiety and depressive symptoms are not uncommon in people living with macular disease. MDFA’s social impact survey found that one in five people experience anxiety symptoms and one in six experience depressive symptoms.2

The impact evaluation for Eye Connect found:

• 74% agreed that regular check-in phone calls helped them feel more supported and heard, and

• There were statistically significant reductions in reported worry about their condition over time.

Overall, qualitative interviews identified themes of empowerment, coping, and increased confidence among participants.

Key points to remember

• Diabetic retinopathy and diabetic macular oedema are complications of diabetes that can threaten your sight if not managed well
• Vision loss can often be prevented with early detection and good diabetes management
• If you notice any changes in your vision, contact your eye health professional straight away
• Regular eye checks are important to detect and manage changes early

Vision changes: what’s normal and what’s not
Early stages of diabetic retinopathy and diabetic macular oedema may have no symptoms. You may not notice any changes in your vision, even if there is damage at the back of your eye.

Possible symptoms to watch for:

• Blurry, distorted, or dim vision
• Wavy or patchy vision
• Frequent changes in your glasses or contact lens prescription
• Sudden onset of haze, shadows, or ‘floaters’ (moving spots or cobwebs in your vision)
• Flashes of light, especially in your side vision
• Colours appearing faded or washed out
• Dark spots or gaps in your vision

Red flags: when to seek urgent review

If you notice any of the following, contact your eye care professional as soon as possible:

• Sudden loss or significant change in vision
• New or worsening floaters or flashes of light
• Sudden appearance of dark patches, shadows, or blank spots in your vision
• Any rapid change in your ability to see clearly

Excerpt from an MDFA patient publication on diabetes-related eye conditions.

EYE CONNECT AND DIABETES-RELATED EYE CONDITIONS

While Eye Connect was initially designed for people with AMD, the program has now been adapted to include people living with diabetic retinopathy and DMO. The rationale is clear: diabetes-related eye conditions carry distinct psychosocial, financial, and lifestyle complexities that extend beyond the disease.

High Treatment Engagement, High Concern

A 2025 survey conducted by MDFA examined the needs of people living with diabetes-related eye conditions. The findings reinforced the need for structured support.7

Almost all respondents were currently receiving, or had previously received treatment, with 80% attending eye appointments every six months or more frequently.

Despite this high engagement, concern and emotional impact scores were elevated – particularly among younger respondents (21–35 years). Younger participants were more likely to report difficulty with visual tasks and demonstrated higher anxiety about future vision.

People with type 1 diabetes reported higher concern and emotional impact, and more frequent treatment schedules. People with type 2 diabetes were slightly more likely to delay treatment due to cost or lack of understanding.

These patterns highlight that clinical attendance does not equate to confidence or comprehension, and as such, ongoing support between clinical visits remains essential.

Identified Support Needs

When asked about support priorities, respondents identified:

• Emotional and wellbeing support (56%),

• Information to understand the condition (46%), and

• Financial guidance regarding rebates and subsidies (38%).

Reported barriers to treatment included:

• Cost (51%),

• Fear or anxiety (44%),

• Work or caring responsibilities (18%), and

• Lack of transport (15%).

These findings align closely with Eye Connect’s three service pillars: disease information, practical support, and psychosocial care.

Supporting Sustained Treatment in DMO

As with neovascular AMD, DMO, and more recently proliferative diabetic retinopathy, management requires repeated intravitreal therapy. The burden of ongoing injections is compounded in diabetes, where patients may already be experiencing treatment fatigue from the ongoing demands of diabetes management.

The tailored nature of the service is designed to achieve similar strong treatment persistence outcomes for people with DMO and proliferative diabetic retinopathy as seen in those with neovascular AMD. Maintaining ongoing intravitreal therapy is essential to preserve vision in this group.

By providing clear explanations of treatment rationale, what to expect during procedures, and practical coping strategies, Eye Connect addresses at least one of the top barriers identified in the diabetes survey: fear/anxiety.

INTEGRATING DIABETES AND EYE CARE CONVERSATIONS

People living with diabetes-related eye conditions are usually under the care of multiple health care providers. Eye Connect offers a consistent point of contact focused on the ocular component of their condition, while recognising the broader health context.

For clinicians, referral to Eye Connect can:

• Reinforce key education delivered in consultation,

• Provide structured follow-up after initiation of intravitreal injections,

• Encourage person-centred shared decision making, and

• Offer psychosocial check-ins that support sustained engagement.

As the prevalence of diabetes continues to grow, scalable support models that complement clinical care will be increasingly important.

FROM PILOT TO IMPACT

Eye Connect was developed in response to identified gaps in support in-between appointments. The six-month impact evaluation demonstrates measurable improvements in understanding, treatment engagement, and perceived support. Satisfaction levels were high in the implementation phase, with 98% of respondents indicating they would recommend the service and 83% finding resources helpful.8

This data suggest that the structured, tailored non-clinical support Eye Connect provides strengthens the effectiveness and complements clinical care.

If treatment persistence, informed decision making and patient confidence are shared goals, then embedding Eye Connect referral into routine practice is a practical step.

Encourage patients with AMD, diabetic retinopathy, or DMO to join early in their journey. Structured support between visits can reinforce what happens in the consulting room – and, as the evaluation shows, help patients stay engaged with sight-saving care.

Victoria Heaton BOptom (UNSW) BSc (Hons) Optometry (UK) is the Executive Manager, Support and Care, at Macular Disease Foundation Australia.

Ms Heaton is an optometrist with over 25 years’ clinical experience across a range of primary eye care settings. She currently leads MDFA's national support and care programs for people living with macular disease.

References available at mivision.com.au.