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Inaugural macular disease study offers fresh insight into patient experiences

The Macular Disease Foundation Australia (MDFA)’s first-ever social impact survey has revealed a quarter of patients have low levels of knowledge of their condition, with roughly the same proportion less than happy with the explanation of their disease by their eyecare professional.

The new report also sheds light on the anxiety among neovascular age-related macular degeneration (nAMD) patients about a proposed Medicare rebate cut for intravitreal injections, and that most early AMD patients are taking supplements, despite the lack of evidence for their efficacy at this stage of disease.

Dee Hopkins.

The organisation’s inaugural longitudinal study was prepared by the Centre for Social Impact and the School of Optometry and Vision Science at UNSW.

It involved 2,169 respondents (13.2% response rate) with various forms of macular disease who have been engaged with MDFA for more than two years. It aims to capture patients’ perception on three levels: individual, service and system.

According to MDFA, a key finding indicated that although 97% of respondents could access information about their disease through multiple sources, 25% only had “fair to poor” knowledge of their condition. Many of these respondents tended to have the poorest vision and a non-treatable form of AMD.

“Those with higher levels of eye- health knowledge tended to report higher levels of life satisfaction, and the majority of patients were happy with the disease information they were given by their optometrist or ophthalmologist, suggesting they are well engaged with eye health systems and supports,” MDFA CEO Ms Dee Hopkins said.

“However, it was found that 23% were ‘less than happy’ with the explanation of their condition, and 35% were not happy with their eye health professional’s knowledge of available support services.”

Interestingly, the survey also found 66% of early AMD respondents were taking supplements, despite a lack of evidence to indicate slowing of progression in this group. Among 133 respondents with intermediate AMD – where supplements can slow progression – 35% were not consuming them, mainly because their eye health practitioner had not recommended them.

The survey involved 2,169 respondents with various forms of macular disease.

“Being diagnosed with a new condition can be overwhelming and there often is a lot of new information to communicate with patients in a limited time. This is a clear demonstration of how patient support organisations, like the MDFA, can offer information and support to both the patient and support time poor optometrists to ensure the messages are received,” Hopkins said.

“One key recommendation from the survey was to align patient engagement between eye health practitioners and MDFA’s services before, during and after diagnosis, and to work with optometrists in further developing stronger patient- practitioner relationships.”

Part of that recommendation also includes working with optometrists and ophthalmologists to relay the MDFA’s support services to patients, as well as discussing with practitioners the appropriate use of supplements for patients.

Concern over rebate cut

The future funding model of intravitreal injections is also front of mind for patients with nAMD, the survey found.

In total, 85% of respondents with nAMD were receiving intravitreal injection treatments. Of the remaining 15% who weren’t, 59% said they were having treatments but stopped, and about 27% said their ophthalmologist had not recommended them.

Another 4.3% indicated costs as the primary barrier. This was reinforced in open-ended responses from some who were concerned about a Medicare rebate reduction for intravitreal injections, proposed by the MBS Review Taskforce in its final report to the Federal Government.

In its summary, MDFA said most with nAMD could access injections in private clinics, with there being limited capacity in the public system. It stated any change to formal support systems must carefully consider the balance between the public and private systems.

“If the proposed 69% rebate cut for eye injection treatment were to be implemented, we anticipate the number of respondents who stop treatment due to costs to drastically increase in follow- up surveys, given the overwhelmingly negative response to the rebate cut that we received from patients during consultations to inform our submission to the MBS Review Taskforce’s draft report,” Hopkins said.

Of the 1,758 people who responded to an open-ended question about their greatest concern about living with macular disease, 92 (5.2%) identified the cost of macular disease as a major concern, with 76 (82%) of those having nAMD.

While this number is relatively low, MDFA stated it could be considerable among the 1.7 million Australians with macular disease. As such, one of its four recommendations was to explore how economic disadvantage, and financial concerns and barriers affect those with vision loss.

In other findings, 75% of respondents using low vision aids saw them as critical for their quality of life. Impact of vision impairment scores also showed for 75% of respondents, macular disease had limited impact on their daily functioning, and caused limited concern over other aspects of their lives. But 14% were highly affected; they tended to be older and solely reliant on age pension for funding their retirement, and had more advanced forms of disease and poorer vision.

Hopkins said the survey provides solid baseline data to inform the proposed ongoing longitudinal study to track changes in quality of life related to vision changes. It will also help monitor which interventions work best and what changes across the system will have the most impact. MDFA plans to repeat the survey each year to follow participants through their disease progression

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