Article

THE AMD PATIENT EXPERIENCE

Our patients get their AMD education from many places; let’s be their primary source by providing stellar patient care

Traditionally, eye health and vision care have held top spots and priority areas of interest and concern with consumers. Today, these topics have become the center of almost everyone’s attention in what I call the “I and eye” phenomenon.

The impetus of “I and eye” seems to stem from the immeasurable value we place on our ability to fight to improve, or save, our sight. Put simply, most of the patients we serve report they would prefer to forfeit any other special sense over losing their ability to see or lead productive visual lifestyles. Add that many patients review their personalized metrics (“How am I now?”), but focus on an analytical approach (“Based on my metrics, how will I be in the future?”), and we are living in a new age of eye health information-hungry patients. Even with the current plethora of data available online, through genetic testing and/or printed medical information, burning, unfulfilled questions remain among most patients:

  • “How does it all apply to me?”
  • “What does it currently mean to me?”
  • “What can I do to prevent or treat it in the future?”

One such group of these patients are those whose family genetics or early retinal findings of fine macular drusen predispose them to an increased risk of developing AMD.

Optometrists should be the point people for patient education on AMD.
Image courtesy of nattyhong/stock.adobe.com

OBTAINING ANSWERS

Patients at increased risk are often prompted to search their family trees for ancestral patterns or relatives in places like 23andMe, only to discover in their reports that, not only did they come from European descent, but they also have one or more AMD genetic variants detected in their DNA sample.

Such patients may also conduct an online or printed medical information search and come across an article that the No. 1 “billion dollar” payout in Medicare Part B claims payments was related to the uptick in anti-VEGF drugs used in treating a blossoming number of exudative AMD patients.

Additionally, predisposed patients may pay a visit to the American Macular Degeneration Foundation website (www.macular.org ) to read that AMD is the third leading cause of blindness worldwide, the leading cause of blindness here in the U.S., twice as prevalent as Alzheimer’s, and as prevalent as all forms of cancers combined. The site may also inform them that the disease is invisible to the naked eye, so only the visible, behavioral symptoms of more advanced vision loss might give someone a clue they have it.

Or, perhaps after searching under “cures for AMD,” these patients read an article about the importance of a healthy diet in staving off AMD-caused vision loss.

Yikes! What are these patients to do with all this information, in terms of processing risk metrics and self-evaluation analytics?

THE AMERICAN HEALTH CONSUMER EXPERIENCE

Here’s a list of what patients value when it comes to communication, according to a recent survey conducted by PwC Health Research Institute:

Deciding treatment options

Knowing what to expect at appointments and procedures

Knowing what to expect next on my treatment plan

Communicating with patience

Upfront explanation of out-of-pocket costs

Online portal for health management

Understanding OTC vs. prescription options.

Knowing my care team and their role

Not having to repeat my information

OVERCOMING INFORMATION OVERLOAD

Data overload can put these patients into a frenzy about their visual future. The good news: We, as primary eye care providers, can overcome this feeling of information overload via human interaction, specifically, maximizing the patient experience through our great strength and ability in fulfilling the growing need for new technology, advanced patient education and counseling.

This real model recipe for success:

  1. A comprehensive dilated eye health exam
  2. Appropriate testing and follow-up frequency based on AMD risk or conversion risk (See “Explain Diagnostic Devices,” p.21.)
  3. A well-documented, overall assessment and plan based on all findings, including macular risk (i.e., recommendations for the frequency of follow-up visits, vitamin therapy, Amsler Grid monitoring, what to do if the Grid changes)
  4. Coordination of care with other healthcare providers, such as primary care physicians
  5. Comprehensive patient counselling, education and greater access to us as providers. We educate our patients at the end of patient counseling by directing them to educational materials, a designated staff person for follow-up questions and, if they don’t get answers they need, they are to call us directly. We also have a protocol and provider back-up ready for when we are out of town. For example, for retinal disease patients, we can get other providers to help streamline answers, responses and care in our absence. Additionally, we have a website/Facebook interface for patients to request information or ask us questions.

Yes, success stems from all the above in concert; especially “Forearmed is forewarned,” since O.D.s are perfectly positioned to alleviate most patient concerns and improve visual health outcomes. Through patient education, we can work with these patients to both decrease the chances of developing AMD and detect and treat aggressive cases sooner. But, the patient must understand and “buy in” to the care plan for it to be effective.

To achieve this, a positive patient-provider relationship must be established through high-quality communication, which, in turn, creates patient (not problem)-centered care and improves quality measures: The patient wins big when we detect, diagnose and treat them properly and choose to have the right processes and plans in place to power education and coordination of care. Key values to the “I and eye” experience are seen through the eyes of a patient when people, processes and technology align:

  1. “Did the O.D. listen to my concerns and give me a reasonable amount of personal time?”
  2. “Did the O.D. or staff member clearly communicate my exam findings?”
  3. “Was I made to understand how I am affected and what I can do about it?”

Our at-risk AMD patients are not looking for highly sophisticated analytic models or reports, they want common sense information.

IT’S UP TO US

So, whether we decide to stream data to patients in our offices on flat screen TV monitors or spend a few extra moments to educate our patients, the true patient experience and their visual future is in our hands. We control the focus and potential outcome of the “I and eye” phenomenon for each patient.

Our ability as O.D.s and as educators, is the key to patient success by letting them see around the corner and prepare them for whatever may come next. OM