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HomeminewsCosts, Denial a Barrier to AMD Care But Do Patients Agree?

Costs, Denial a Barrier to AMD Care But Do Patients Agree?

Optometrists have identified costs, patient denial and a poor patient pathway as major barriers to quality care of people with age related macular degeneration (AMD), however patients may have a different story to tell, according to Australian researcher Dr. Isabelle Jalbert, Deputy Head of the University of New South Wales Australia School of Optometry and Vision Science.

Dr. Isabelle Jalbert is undertaking a research project that aims to understand the perspectives of eye care practitioners, patients and carers when it comes to the delivery of quality care. Having interviewed and conducted focus groups with ophthalmologists and optometrists, she is currently enrolling patients and carers for her study.

In an abstract presented at the Annual Meeting of the Association for Research in Vision and Ophthalmology-Asia (ARVO-Asia) in Brisbane last month (February), Dr. Jalbert wrote that “despite evidence-based recommendations to decrease risks and progression of age-related macular degeneration having existed for some time, self-reported practices suggests that practitioners’ advice and patients’ adherence to these recommendations can be very poor.” She hopes that determining why this is the case can lead to an improved model of care.

In the first stage of her study, 45 Australian optometrists from three states (NSW, QLD, VIC) were asked to individually rank their perceived top five barriers to good care and participated in focus groups.

…50 barriers to AMD were identified with cost selected in the top five barriers by most optometrists

Dr. Jalbert reported that 50 barriers to AMD were identified with cost selected in the top five barriers by most optometrists (36 out of 45). Additionally she said cost was ranked first and second in all but one focus group. “This encompassed both cost to the patient, such AMD supplements and transportation to care, as well as costs to optometrists, such as imaging equipment and chair time costs. Other costs such as lack of funding for AMD research was also included.”

Participating optometrists identified other barriers including patient denial, poor understanding, poor compliance and a poor care pathway. Dr. Jalbert acknowledged that the recent release of the Royal Australian New Zealand College of Ophthalmologists (RANZCO’s) referral pathway for macular degeneration could alter perspectives on the patient care pathway and further research may be required as a result. She said initial interviews with patients and carers had identified different barriers however this was not uncommon when researching the perspectives of medical professionals and patients.

Country Optoms and Ophthals NEEDED

The study is still seeking input from orthoptists, optometrists, and ophthalmologists practicing outside major urban centres. Please contact the study investigators using details below to volunteer to participate over the phone. Alternatively, an optometrists’ focus group will be held in Toowoomba on Thursday 8 February at the Toowoomba Motel and Events Centre.

Patients and Carers NEEDED

Dr. Jalbert has asked optometrists and ophthalmologists to contribute further to the study by encouraging patients and their carers from around the country, in metro and regional areas, to participate.

“We have now received approval by the UNSW Human Research Ethics Committee (HC15776) to recruit AMD patients and carers via optometrists and ophthalmologists. Over the next few months we will be travelling through Queensland, New South Wales and Victoria to conduct focus groups and speak to AMD patients. We can also conduct one-on-one interviews over the phone or in person, depending on each patient and carer’s needs.

“Our aim is to talk to a wide range of patients and their carers to find out what they understand about macular degeneration, how information has been delivered to them, how and what they were told about their AMD when initially diagnosed and how they feel about living with the disease. We also want to know about how they are managing their treatment – what they find difficult and what might be preventing them from accessing quality care and treatment,” said Dr. Jalbert.

Optometrists and ophthalmologists can help by passing on the invitation to participate in the study to their AMD patients and by posting an advertisement of the study in their practices.

She said focus groups take one hour while interviews can take 30 minutes to an hour.

For more information contact:
Dr Isabelle Jalbert: (AUS) 0447 139 798, email i.jalbert@unsw.edu.au, or
Dian Rahardjo: (AUS) 0405 591 117, email d.rahardjo@unsw.edu.au


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