There is no substitute for the quality of life good vision gives. Because of visual impairment, patients with age-related macular degeneration (AMD) may struggle to live their daily lives without help. More than physical impairment, AMD can cause patients to be depressed and pessimistic about their future. This can end up hurting their chances of adapting, or even improving, their quality of life.
Expectations vs. Outcomes
A 2017 study linked patients’ health expectations and their actual outcomes. The findings suggest that informal care (friends and family who help the patients at home) and happiness are imperative when it comes to patients’ health outcomes.
“AMD patients requiring others’ help for self-care have worse HRQOL (health-related quality of life), expect shorter life and lower HRQOL for future ages. Patients’ happiness in general has a deterministic role as well, both in current health status utility evaluation and subjective health expectations.”
These results demonstrate the importance of eye care professionals having discussions with patients about long-term expectations and care. Paul Freeman, O.D., and Eli Peli, M.Sc., O.D., have been working with patients with low vision quality for many years. “It should come as no surprise that a chronic health condition that presumably will not get better and, in fact, could get worse, and which impairs function and creates a disability, can negatively affect projected quality of life,” explains Dr. Freeman.
What Can You Do?
In an article for American Optometric Association’s Clinical Eye Care, these two doctors shared a few suggestions for eye care professionals to utilize and help these patients become more positive and, possibly, have more positive outcomes.
It can be difficult to understand fully what a patient may be experiencing after being identified with AMD or any other long-term eye health concern. Tell them that it’s acceptable to be upset; take the time to listen to their frustrations. Do everything you can to help them realize that their future doesn’t have to be as dismal as they may anticipate, but they need to keep an open mind.
Ask & Answer
Of course, eye care professionals need to answer any questions patients have to the best of their ability, but it’s also important for them to ask questions. Asking certain questions like “Are you driving?”, “Do you live alone?”, or “What does your typical day consist of?” helps eye care professionals better understand what matters in a patient’s life.
Consider Low-Vision Rehabilitation
Vision rehabilitation can be a pivotal step in helping patients become independent. Patients can choose from optical, non-optical, electro-optical, and environmental modification options. These choices put patients back in charge and allow them to be self-reliant and maintain as much independence as possible. “However,” Dr. Freeman warns, “to get to that point, the patient has to be an active participant in potentially learning new ways to achieve that goal.”
Doctor-patient communication is key to a better understanding and outcome. Explaining the options for care and planning together will help these patients maintain some independence while tempering long-term expectations.
Learn more about helping patients understand AMD by reading Raising AMD Awareness in Your Patients.