I would argue that providing exceptional care to the AMD patient is comprised of three steps: (1) diagnosing the disease and explaining the condition to the patient; (2) monitoring progression and prescribing based on modifiable risk factors, e.g., an ocular nutritional supplement, UV protection, smoking cessation, etc; and (3) educating patients on what they can expect when we refer them to a retinal specialist. This third, perhaps, more frequently overlooked step, is the focus of this article.
I have found that prepping our wet AMD patients for what they can expect is paramount to achieving a compliant patient, who, therefore, has an increased likelihood of a satisfactory outcome. Here, I discuss how.
PROVIDE EDUCATION AND REASSURANCE
Patients who are previously diagnosed with wet AMD or those who have just converted from the dry to the wet form are, understandably, apprehensive about what’s next in their care.
To start, optometrists should explain to dry AMD patients early on in the observation process that a referral to a retinal specialist is a possibility down the road. I have found that doing so goes a long way in helping these patients to mentally prepare for this encounter vs. being surprised and, therefore, anxious:
“Mrs. Jones, the reason it is so important for us to monitor your AMD every few months is so that we can confirm that no new blood vessels have grown. These weak blood vessels are not healthy, and they leak, causing scarring and vision loss.”
When it’s time for the referral, we can provide calm by saying something along these lines:
“Mrs. Jones, unfortunately it appears you do have a change that indicates the growth of new, leaky blood vessels that can lead to permanent vision loss, if not addressed right away.
The retinal specialist I’m referring you to is highly skilled in examining and treating patients who have wet AMD, which is why I’m sending you to her.”
After providing reassurance, optometrists should give specifics about what these patients can expect during their first visit to the retinal specialist:
“Mrs. Jones, when you see Dr. ________, she will perform her own testing to determine the treatment course she believes will produce the best outcome. One of these tests may be fluorescein angiography. During this test, an IV in your arm is used to inject dye into the blood stream. This allows the doctor to see the blood vessels in your retina that may indicate the severity and exact location of your AMD.”
EDUCATE ON POSSIBLE TREATMENTS
O.D.s should, to the best of their ability, anticipate the tertiary care that will be provided, so they can explain possible treatments these patients may undergo while in the care of the retinal specialist. It helps for the optometrist to know his/her retinal specialist well, along with his/her typical decision pattern for treatments. (For guidance on maintaining collaborative care relationships, see the April issue of the magazine, online at bit.ly/2RCZiuo .)
“Mrs. Jones, Dr. ________ is going to provide treatment that he/she feels your AMD will best respond to. Most patients benefit from a periodic injection into the eye, while others may need laser therapy.”
The mainstay of treatment for wet AMD is an intravitreal anti-VEGF agent. While other therapies are FDA approved for the treatment of wet AMD (e.g. focal laser, photodynamic therapy), these are not used as often, given the success of the injectables:
“Mrs. Jones, anti-VEGF therapy inhibits the growth of the leaky blood vessels in your eye, and therefore can prevent vision loss. After a numbing medicine is applied, this therapy is given via injection into your eye. The procedure should not be painful and takes just a few minutes. Depending on the drug the retinal specialist uses, the effect lasts for a month or more, and typically will require ongoing injections to stave off vision loss.”
I don’t spend a ton of time discussing the risk factors associated with multiple injections of anti-VEGF medications, because published research shows the benefits so greatly outweigh the risks for these patients. That said, I do explain to these patients that this therapy can cause an increase in eye pressure, which causes glaucoma, so I must monitor for this. Additionally, I discuss the prevalence of subconjunctival hemorrhage, secondary to injections simply to let them know in advance that this is relatively common and without danger — saving everyone an unnecessary phone call or visit.
One other item I discuss with these patients is to ask the surgeon to give anti-VEGF injections while the patient is reclined. My reasoning: My practice had a patient once suffer syncope upon receiving an injection. As the patient slumped forward, the needle pierced the optic nerve, and the patient lost all functional vision in that eye: not a commonly reported adverse event, but clearly a preventable one.
DISCUSS APPOINTMENT COMPLIANCE
After providing education on what these patients can expect from the retinal specialist, I end the conversation by stressing the importance of maintaining their scheduled appointments and not delaying care:
“Mrs. Jones: AMD is a sight-threatening disease, so it’s crucial you adhere to all your appointments, so that myself and the retinal specialist can do everything possible to prevent vision loss. Did you know that recent studies show that AMD patients who consistently adhered to their appointment schedules had better vision than those who skipped their appointments?” (See “Low Vision Discussion” below.)
There is equal importance in helping the patient to understand the need to continue with his/her visits with the O.D. as well as the retinal specialist. Patients can be lost to follow up in the “black hole” of retina, in my experience. While these patients are receiving excellent expert care for their AMD, they may not realize other aspects of ocular health and vision continue to be need attending to.
LOW VISION DISCUSSION
Depending on the stage of progression and the needs of the patient, a low vision consultation may be in order at some point. So, at what point should we consider the low vision examination and magnifying aids? My answer is whenever we feel low vision would benefit the patient’s quality of life.
Most AMD patients are not aware low vision aids exist, and they are even less so aware that may qualify for low vision resources provided through federally funded programs. For example, in the state of Alabama, the Alabama Department of Rehabilitation Services implements a “federally funded program designed to help individuals aged 55 and older who have vision loss live more independently in their homes and communities.” Specifically, the program offers these Alabamians rehabilitation instruction, orientation and mobility instruction, low-vision examinations and devices, resource and referral information, individual peer support and support groups.
Low vision services abound with resources readily available. For example, Enhanced Vision (bit.ly/34V0j6f ) links to low vision resources by state, VA blind rehabilitation centers and locations and a bevy of low vision information and solutions. Services and programs exist if the optometrist exerts the effort to locate them or chooses to become proficient and provide the care in-house.
My interaction with Mrs. Jones to prepare her for the low vision consultation and expectations sounds like this:
“Mrs. Jones, I believe you would be best served by me referring you to a specialist who works with low vision patients all day, every day. A low vision specialist will perform an exam to discover what your potential vision is and to maximize that vision with magnifiers or other devices that will help improve your quality of life. They can’t make your vision problems disappear, but they can help to enhance the healthy parts of your eye to give you the best outcome possible. They are more familiar with the many resources, programs and technologies that can aid you.”
I opt for the fully integrated low vision clinic 150 miles from my office because it employs the latest technology and makes certain our patients are comfortable utilizing their functional vision. I have no problem asking the patient to travel this distance to see doctors who are experts rather than dabblers. I have found they are more familiar with the examination, availability of devices and resources for which these patients might qualify.
Considering the immense advantages and improvement in quality of life these tools create, we have no excuse not to be staunch advocates and prescribers of low vision services. OM
See bit.ly/2wUHALow for the O.M. newsletter, “Managing Low Vision.”
As America’s primary eye care providers, optometry has always been positioned to be the gatekeepers in the diagnosis and management of AMD. The number of cases will continue to rise as America grays. Optometry must meet the challenge of this potentially debilitating disease by actively diagnosing it, monitoring it using the latest devices, prescribing ocular nutritional supplements, UV protection and lifestyle changes, where indicated and, yes, providing education on what patients can expect in the care of the retinal specialist. OM