Survey Finds Retina Specialists Positively Impact Treatment, Patient Journey for People with Macular Degeneration
—Health Union launches MacularDegeneration.net to provide a safe, supportive, accessible environment for people living with macular degeneration—
PHILADELPHIA — July 8, 2019 — A new survey from Health Union finds that people with macular degeneration who regularly see a retina or macular degeneration specialist for care have more satisfaction with their healthcare professional relationships, treatment plan and have a better grasp of their condition than those who regularly see other HCPs. The survey, titled Macular Degeneration In America 2019, illuminates the perspectives and experiences of people living with macular degeneration. The findings also support the launch of MacularDegeneration.net, Health Union’s 21st chronic condition-specific online community.
Of the survey’s 461 respondents, 51% said they see a retina specialist or macular degeneration specialist most often for their condition. Three in 10 respondents said they typically see an ophthalmologist, 11% see an optometrist and 6% don’t regularly see any HCPs for their macular degeneration.
Retina specialists are ophthalmologists specializing in diseases of the vitreous body of the eye and the retina, such as macular degeneration. Survey respondents who regularly see a retina or macular degeneration specialist were more likely than those who don’t to be diagnosed with wet age-related macular degeneration, in which vision loss can quickly progress. Conversely, those who don’t see a specialist are more likely to not know what type of macular degeneration they have.
However, access to retina specialists – compared to non-specialist ophthalmologists – can be difficult for some patients. The American Society of Retina Specialists has more than 3,000 members worldwide, while the American Academy of Ophthalmology reports more than 19,216 active ophthalmologists in the United States alone.
As a result, transportation, which is already a burden for people with macular degeneration, becomes a bigger factor. Of survey respondents who regularly see a retina or macular degeneration specialist, 36% have traveled at least 30 miles – with 5% traveling more than 100 miles – for an appointment. Unsurprisingly, respondents who regularly see a specialist were more likely than those who don’t see a specialist to receive help with transportation to and from appointments.
Survey findings suggest that seeing a retina or macular degeneration specialist can also impact treatment. About four in 10 of all respondents said they feel their macular degeneration is well-managed with their current treatment plan; those who regularly see a specialist were more likely than those who don’t to agree with this statement.
All of these factors appear to impact patients’ perceptions of their HCP relationships. Respondents who regularly see a specialist were more likely than those who don’t to say they were satisfied with the care received from their HCP. They were also more likely to say they completely agree with their HCP on the severity of their macular degeneration, believe their HCP clearly explained treatment options and think their HCP provided easy-to-understand test results.
“As our Macular Degeneration In America survey findings reveal, with many people with macular degeneration experiencing limited access to retina specialists, there is a clear need for an environment that provides condition-specific information, support and validation,” said Tim Armand, co-founder and president of Health Union. “MacularDegeneration.net was founded on this principle and aims to provide relevant content and resources, such as an accessibility toolbar that makes the viewing experience easier for people with vision limitations, for all aspects of the patient journey.”
Macular Degeneration In America 2019 surveyed 461 respondents living with macular degeneration from Jan. 3 to Mar. 29, 2019. A summary infographic of the results is available on MacularDegeneration.net; additional survey results may be available upon request.
About Health Union
Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company creates condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 22 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Type2Diabetes.com.