Findings of the inaugural Macular Disease Social Impact Survey have revealed what eyehealth practitioners can do to better support the needs of macular disease patients.
The baseline report, commissioned by Macular Disease Foundation Australia (MDFA), is the first in a longitudinal study to understand the impact macular disease has on people’s lives. The survey aimed to uncover the factors that may help macular disease patients cope with and manage their condition.
Macular disease patients who knew more about their condition, however, reported higher levels of life satisfaction as well as less functional and emotional impact
The study, prepared by the Centre for Social Impact and the School of Optometry and Vision Science, University of New South Wales, is aligned with the objectives of the National Strategic Action Plan for Macular Disease.
It gathered the thoughts of 2,169 people living with macular disease to better understand their experience of the condition.
Happily, three quarters of respondents said their condition caused limited impact on, and concern over, their daily functioning, while nearly 60% gave a life satisfaction score of eight out of 10 or higher.
Those with a lower quality of life tended to be older, have poorer vision, solely rely on the age pension to fund their retirement – and, significantly, possess a lower level of eyehealth knowledge.
Macular disease patients who knew more about their condition, however, reported higher levels of life satisfaction as well as less functional and emotional impact.
Although 77% agreed their optometrist or ophthalmologist had provided a good explanation of their condition, and 65% agreed their optometrist or ophthalmologist was knowledgeable of available support services, the remainder were “less than happy” with their practitioner’s knowledge in these areas.
“This is where MDFA can help,” explained the Foundation’s Chief Executive Officer, Dee Hopkins.
“One of the survey’s key recommendations was to align patient engagement between eye health professionals and MDFA’s services before, during and after diagnosis. The baseline report recommended MDFA, optometrists, ophthalmologists and other eye health professionals work together to develop effective practitioner-patient relationships.”
Optometrists and ophthalmologists can refer patients with macular conditions to MDFA via Oculo, or directly. MDFA can then support the ongoing and changing needs of the patient with non-clinical, independent and free advice and support throughout their journey.
MDFA encourages early referral of macular disease patients to ensure the patient has the best understanding of their condition and how to minimise progressive vision loss. This will help all patients to maintain an optimal quality of life throughout their macular disease journey.
The Macular Disease Social Impact Survey is the first in a series to trend patient-reported outcomes and experience over time, and the insights from this, and future results, will enable MDFA and other key stakeholders to change service and systems to have a greater collective impact on the quality of life of people living with macular disease.
“MDFA looks forward to working with optometrists and ophthalmologists to assist you in relaying the support services offered by MDFA to patients and promoting health literacy and health behaviours among your patients,” Ms Hopkins said.
“Together, MDFA and eye-health practitioners can build an enhanced, integrated system of support for every person living with macular disease.”
MACULA MONTH 2021
Next month, from 1 to 31 May, is Macula Month, MDFA’s annual campaign that raises awareness of all macular diseases, including age-related macular degeneration, diabetic eye disease and other less common diseases of the macula.
The Foundation offers a range of resources to help you communicate quickly and clearly with your patients about their risks of a macular disease and steps to minimise the risks. Visit www.mdfoundation.com.au to find out more about this year’s campaign and access the Foundation’s popular Check My Macula quizz.