Article

What Are We Missing?

Steps for developing an educational program to help reduce missed amd diagnoses

Are we missing signs of early AMD? According to recent research, the answer is yes. A cross-sectional study1 of primary eyecare practices in Birmingham, AL, focused on 644 subjects who were 60 years or older with normal macular health based on their most recent dilated comprehensive eye examination by an ophthalmologist or optometrist. Researchers found that signs of AMD were missed on a quarter of otherwise seemingly normal eye exams.

Indeed, approximately 25% of eyes identified as normal by primary eyecare physicians based on dilated eye examination were found to have macular characteristics indicating AMD by fundus photography and trained raters. Thirty percent of undiagnosed eyes ultimately had AMD with large drusen that would have been treatable with nutritional supplements had it been diagnosed, according to the study.1

The study also discussed some of the characteristics of patients with missed diagnoses, which included older eyes, men, and those with less than a high school education. But it revealed no difference between phakia or pseudophakia or between optometrists versus ophthalmologists.

What’s interesting is that cataract status or eyecare professional education had no bearing on missed diagnoses. In addition, one would assume a primary care eye doctor would scrutinize the maculas of their older patients more closely, as these patients are at higher risk for AMD. Perhaps the mostly white, non-Hispanic population in the study had more blonde fundi, or certain subjects were very photophobic, limiting a good evaluation. Nevertheless, a 1-in-4 rate of missed diagnoses is very high.

It’s worth noting that this cohort stemmed from patients examined between 2009 and 2011. Since then, the practicality and cost of regular imaging use, such as fundus photography and OCT, has improved. It is possible that if this same cohort were examined today with more consistent use of such technology, there would be fewer missed diagnoses. OCT has been shown to be important in the diagnosis and management of AMD and is recommended by the American Academy of Ophthalmology Preferred Practice Patterns for AMD.2,3

In addition, new clinical and technological strategies to improve early detection of macular degeneration have been developed, and, if employed, could reduce the number of missed diagnoses (See “Early AMD Detection,” page 10).

Yet, another important strategy to reduce missed AMD diagnoses, highlighted by the findings of the study,1 is to focus on educating those at the center of the study: primary eyecare professionals and their patients. Indeed, the very real possibility that patients may not understand the importance of undergoing regular dilated eye exams, especially after age 50, and more often for those with a family history of AMD, limits the ability of primary eyecare professionals to diagnose AMD. In surveys in the U.S., Australia and Canada, only 20-30% of respondents indicated they were “very familiar” or “somewhat familiar” with AMD.3,4 For a condition that is the leading cause of visual impairment in those over age 50 in the U.S,5 it is a severe shortcoming in our health education that most patients do not know this.

Thus, retina specialists, in particular, are presented with an opportunity to be at vanguard of educational efforts to help reduce missed AMD diagnoses and thereby help to prevent vision loss. Early AMD diagnosis means earlier intervention, and it’s been shown that earlier intervention leads to better outcomes in AMD treatment.6

COMPONENTS OF AN AMD EDUCATIONAL CAMPAIGN

Like any good messaging effort, a comprehensive AMD educational campaign addresses the key questions of who or what, where, when, how, and why, with the level of detail and clinical or scientific terminology and concepts varying depending on your audience (ophthalmologists, optometrists, general public, or the community from which you are likely to draw your patients).

In addition, the campaign must target the motivations and interests of each group, which will differ as well. Gearing your campaign’s efforts toward the interests of each group will make your message more interesting. This doesn’t mean the motivations are mutually exclusive, but emphasizing certain components over others will be helpful. Indeed, there will be many opportunities to educate at all levels.

LEVERAGE MULTIPLE PLATFORMS

Depending on how far you take it, your AMD educational campaign can — and likely should — consist of multiple parts unfolding on multiple platforms, including speaking engagements for local community groups or events, brochures, interviews for TV news broadcasts and newspaper articles, a web page on your practice website, and a social media presence.

For your patients, in particular, having a good website with plenty of educational materials on AMD and ease of making appointments will be important, as will a social media presence with Facebook, Twitter, and Instagram. While your typical AMD patient may not be very tech savvy (although you’ll be surprised how many of them are these days), younger family members who will be driving them to their appointments are likely to be active on social media. But remember: regular updates are extremely important. Even linking to a new article on AMD will be helpful if your time is too limited to regularly write new content. A website or social media account that hasn’t been updated in a year or two looks worse than not having one at all.

As a retina specialist, you should make a point to leverage all available channels to expand your reach. In addition to in-house and online marketing, speak at local health fairs and community centers — especially those focused on seniors and adult communities. It’s also a good idea to consider partnering with local ophthalmologists or going it alone with your own practice to present AMD awareness conferences for optometry CE credit. In addition, many hospital systems, not just universities, regularly hold grand rounds. Offering to speak at these events can get your name out to primary care physicians, while your lecture should demonstrate the necessity of stressing to patients the importance of having regular eye exams. Becoming active in your state and county medical societies can be a great way to network and present opportunities to deliver an AMD awareness lecture.

CONTENT IS KING

As discussed in the previous section, it is important to understand your target audience. Your AMD education campaign’s “what” — or specific content — will vary by audience. For example, in targeting the community, you should stress the importance of regular eye exams, educate attendees on the symptoms of AMD (such as metamorphopsia, scotoma, photopsias, and decreased vision but discuss in layman’s terms), and emphasize healthy lifestyle choices that can affect eye health. Healthy lifestyle choices include a diet rich in antioxidants with AREDS 2 vitamin supplementation, if indicated, exercise, and quitting smoking.

Content can be more complex when your audience consists of primary eyecare providers. An optometrist as part of a hospital system or a multispecialty practice versus one in solo private practice will have different incentives and business practices. Without wading into the details of scope of practice, I recommend that you keep in mind what your state allows and how that might affect your own recommendations on patient management. Speaking to an audience of ophthalmologists at a university versus multispecialty versus private practice will be different, as well.

In many ways, optometrists serve as the front line of eye care, as most patients will go to them first. This is why it is important to ensure they understand how to examine for and diagnose AMD. Remind them what clinical characteristics to look for, including how to determine intermediate drusen under difficult situations, such as a cloudy cornea/cataract with a blonde fundus. In addition, ensure that local optometrists always ask patients for an AMD family history and perform a comprehensive dilated eye exam on all patients older than 50.

As I mentioned earlier, imaging is increasingly being used for support and diagnosis. Fundus photography for baseline examination and OCT are key examples. In fact, a recent publication on automated drusen detection with en face OCT demonstrates the increasing usefulness of imaging in early detection and management.7 Many optometrists today have OCTs and wide-field imaging. Educating them on how to interpret their images, if applicable, could turn into a potential referral.

Speaking of which, it is critical to educate optometrists on when to refer to a retina specialist for further evaluation and treatment. Providing your audience with examples of imaging that shows early subtle neovascular changes can be helpful.

When educating optometrists, your goal should be to ensure they have all the tools they need to diagnose these patients, but also to understand when to refer and provide them the support to do so.

Early AMD Detection: Better monitoring technologies and strategies can lead to better outcomes

A 2017 JAMA article by Allen Ho and colleagues reviewed the baseline characteristics of various cohorts of large-scale AMD treatment studies and found similarities that led to improved visual outcomes.1 Specifically, younger patients with choroidal neovascular lesions that were smaller and associated with better initial visual acuity were more likely to have better visual acuity up to 2 years after the initiation of AMD treatment. These characteristics can be maximized with earlier detection.

As physicians, we’re often hyper-focused on determining what medicine works best for our patients. But this study suggests that an even better strategy is to encourage earlier detection. Besides improving patient and physician education, another approach is to improve patient monitoring. Indeed, many exciting new monitoring tools and strategies2 are emerging to help us help patients take control of their AMD treatment. Here, we discuss a few of them.

Kaiser Permanente Early AMD Screening Program

The Eye Monitoring Program at Kaiser Permanente in Southern California has won numerous accolades for its diabetic retinopathy screenings.3 Kaiser Permanente is also working to implement a similar strategy to catch progression of AMD early by standardizing eye evaluations with a centralized OCT reading center and regular Amsler Grid testing. Because OCT provides high-resolution, noninvasive, cross-sectional imaging, it may detect AMD progression before patients become symptomatic.4,5

Patients are enrolled once they are determined to have early AMD without any other eye conditions requiring regular exams by a primary eyecare professional. Each patient receives an OCT scan twice a year at their local clinics, and the images are evaluated by the Kaiser Permanente reading center. In addition, patients are contacted monthly about their home Amsler grid use. Patients who report a change or have new findings on OCT are seen by an ophthalmologist right away. This increases patient engagement in their care, potentially detects progression of disease faster, and limits frequent, unnecessary doctor visits in the early stages of AMD. More than 1,700 patients have been enrolled in this program in the last 4 years. An analysis of the data is forthcoming.

Preferential Hyperacuity Perimetry

A particularly promising development involves Preferential Hyperacuity Perimetry (PHP), which operates on a principle similar to that of Amsler grids. Although widely used because of their low cost and ease of use, Amsler grids have low sensitivity and specificity for AMD.6 Developed to allow early detection of neovascular AMD with much greater sensitivity and specificity than the Amsler grid,7 PHP can be used by patients at home on a patented technology called ForeseeHome (Notal Vision). A series of dotted lines are presented to the retina, stimulating a colinear set of retinal receptive fields that, in turn, are processed in the visual cortex. As in AMD, the originally straight lines are perceived with a shift disturbance in the retinal morphology. Patients test themselves on the device that automatically sends the results to a data center, which then sends them to an eyecare professional. Clinical Phase III trial (HOME study) results were so promising that early study termination was recommended.8,9

Artificial Intelligence in AMD

One of the hottest areas in research is using artificial intelligence (AI) to help doctors analyze data for earlier detection of certain diseases, such as cancer,10 Alzheimer’s,11 and pneumonia.12 Considering the large amount of data introduced by OCT for AMD, computerized analysis through machine learning (i.e., artificial intelligence) may overcome some limitations of subjective analysis. Several companies and researchers13-17 are developing software to accomplish this. For example, Cirrus OCT devices (Carl Zeiss Meditec) employ the FDA-approved “Advanced RPE Analysis Tool,” and it has proven to be effective.18,19

Notal Vision, the company behind the ForeseeHome, is also looking at AI for OCT automated AMD detection,20 with its Home-OCT device.21 Currently in development, the Home-OCT utilizes the company’s Notal OCT Analyzer to analyze images taken at home between visits and notify physicians of any changes in the patient’s condition. Should expense and logistics not be prohibitive, this could prove to be the ultimate in home-monitoring for AMD.

Shape-discrimination Hyperacuity

Another option is shape-discrimination hyperacuity (SDH), in which patients self-evaluate changes in the contours of shapes, such as circles, on a smartphone app called MyVisionTrack (myvisiontrack.com ). Studies have demonstrated very high sensitivity with no effect from contrast reduction and little change in normal aging, two important potentially confounding factors in AMD patients.22,23 The test is cleared by the FDA and available with a prescription. Data from the app are sent to a remote monitoring database that can send reminders and alert the prescribing physician of any persistent changes, thereby getting the patient in sooner for earlier detection and treatment.24 The fact that the test can be downloaded to personal smartphones and other devices rather than to a proprietary device could make this option accessible to more patients.

Early Detection, Better Care

The importance of earlier AMD detection, whether through better education or better monitoring, cannot be overstated. Emerging technology is being developed to help us fight AMD much earlier — and more effectively — than ever before.

References

  1. Ho AC, Albini TA, Brown DM, Boyer DS, Regillo CD, Heier JS. The potential importance of detection of neovascular age-related macular degeneration when visual acuity is relatively good. JAMA Ophthalmol. 2017;135(3):268-273.
  2. Keane PA, de Salvo G, Sim DA, Goverdhan S, Agrawal R, Tufail A. Strategies for improving early detection and diagnosis of neovascular age-related macular degeneration. Clin Ophthalmol. 2015;9:353-366.
  3. Kaiser Permanente Research. Eye monitoring center: Innovation leads to smarter screening. October 2016. Available at: https://www.kp-scalresearch.org/AboutUs/Annual-Reports/RE_2015EyeMonitoringCenter.pdf ; last accessed July 19, 2018.
  4. Huang D, Swanson EA, Lin CP, et al. Optical coherence tomography. Science. 1991;254(5035):1178-1181.
  5. Keane PA, Patel PJ, Liakopoulos S, Heussen FM, Sadda SR, Tufail A. Evaluation of age-related macular degeneration with optical coherence tomography. Surv Ophthalmol. 2012;57(5):389-414.
  6. Crossland M, Rubin G. The Amsler chart: absence of evidence is not evidence of absence. Br J Ophthalmol. 2007;91(3):391-393.
  7. Goldstein M, Loewenstein A, Barak A, et al. Results of a multicenter clinical trial to evaluate the preferential hyperacuity perimeter for detection of age-related macular degeneration. Retina. 2005;25(3):296-303.
  8. Chew EY, Clemons TE, Bressler SB, et al. Randomized trial of the ForeseeHome monitoring device for early detection of neovascular age-related macular degeneration. The HOme Monitoring of the Eye (HOME) study design – HOME Study report number 1. Contemp Clin Trials. 2014;37(2):294-300.
  9. Chew EY, Clemons TE, Bressler SB, et al. Randomized trial of a home monitoring system for early detection of choroidal neovascularization home monitoring of the Eye (HOME) study. Ophthalmology. 2014;121(2):535-544.
  10. Parmeggiani D, Avenia N, Sanguinetti A, et al. Artificial intelligence against breast cancer (A.N.N.E.S-B.C.-Project). Ann Ital Chir. 2012;83(1):1-5.
  11. Lee W, Park B, Han K. Classification of diffusion tensor images for the early detection of Alzheimer’s disease. Comput Biol Med. 2013;43(10):1313-1320.
  12. Kermany DS, Goldbaum M, Cai W, et al. Identifying medical diagnoses and treatable diseases by image-based deep learning. Cell. 2018;172(5):1122-1131.
  13. Treder M, Lauermann JL, Eter N. Automated detection of exudative age-related macular degeneration in spectral domain optical coherence tomography using deep learning. Graefes Arch Clin Exp Ophthalmol. 2018;256(2):259-265.
  14. Schmidt-Erfurth U, Klimscha S, Waldstein SM, Bogunović H. A view of the current and future role of optical coherence tomography in the management of age-related macular degeneration. Eye (Lond). 2017;31(1):26-44.
  15. Nathoo NA, Or C, Young M, et al. Optical coherence tomography-based measurement of drusen load predicts development of advanced age-related macular degeneration. Am J Ophthalmol. 2014;158(4):757-761.
  16. Farsiu S, Chiu SJ, O’Connell RV, et al. Quantitative classification of eyes with and without intermediate age-related macular degeneration using optical coherence tomography. Ophthalmology. 2014;121(1):162-172.
  17. deSisternes L, Simon N, Tibshirani R, Leng T, Rubin DL. Quantitative SD-OCT imaging biomarkers as indicators of age-related macular degeneration progression. Invest Ophthalmol Vis Sci. 2014;55(11):7093-7103.
  18. Gregori G, Wang F, Rosenfeld PJ, et al. Spectral domain optical coherence tomography imaging of drusen in nonexudative age-related macular degeneration. Ophthalmology. 2011;118(7):1373-1379.
  19. Abdelfattah NS, Zhang H, Boyer DS, et al. Drusen volume as a predictor of disease progression in patients with late age-related macular degeneration in the fellow eye. Invest Ophthalmol Vis Sci. 2016;57(4):1839-1846.
  20. Chakravarthy U, Goldenberg D, Young G, et al. Automated identification of lesion activity in neovascular age-related macular degeneration. Ophthalmology. 2016;123(8):1731-1736.
  21. Our Pipeline. Notal Vision Website. https://notalvision.com/pipeline/ . Accessed July 19, 2018.
  22. Wilkinson F, Wilson HR, Habak C. Detection and recognition of radial frequency patterns. Vision Res. 1998;38(22):3555-3568.
  23. Wang YZ, Wilson E, Locke KG, Edwards AO. Shape discrimination in age-related macular degeneration. Invest Ophthalmol Vis Sci. 2002;43(6):2055-2062.
  24. Kaiser PK, Wang YZ, He YG, Weisberger A, Wolf S, Smith CH. Feasibility of a novel remote daily monitoring system for age-related macular degeneration using mobile handheld devices: results of a pilot study. Retina. 2013;33(9):1863-1870.

MESSAGING TO OPHTHALMOLOGISTS

Educating ophthalmologists can be similar to that of optometrists, but you must first determine what the referring general ophthalmologist is comfortable treating. Many younger practitioners want to do their own anti-VEGF injections, as this is a regular part of their residency education. If so, it would be beneficial to find out how they would like help in supporting their patients. In addition, educating them on the signs and symptoms of complications of AMD treatment, such as hypersensitivity reactions to anti-VEGFs and endophthalmitis, will help ensure these patients are promptly referred. Informing them about treatments coming through the pipeline will help them see you as a supportive colleague and good referral option, if needed, for certain patients.

DON’T OVERLOOK OTHER LOCAL PROVIDERS

It’s also worth reaching out to your local primary care, urgent care, and emergency care physicians. As we now know, the training we had examining the eye in medical school was limited. Holding a grand rounds lecture at the local medical school, medical society, or hospital can be a great way to let others know what to look for with a simple direct ophthalmoscopic exam in someone who fits the profile of a high-risk AMD patient. Creating awareness that AMD is the leading cause of visual impairment in those over 50 helps to catch the disease when examining a patient with visual complaints. At a minimum, it reminds them to think about referring out as well.

THE “WHEN” OF YOUR CAMPAIGN

The timing of your educational campaign will take planning. Some practices employ marketing consultants, but you can do it on your own. Either way, it’s important to map out certain events and actions over a period of 1 or 2 years in advance to ensure you don’t miss valuable opportunities to get the word out about AMD and how you can help. Knowing when certain health fairs, community events, grand rounds, CE events, and state and county society meetings and conferences occur can help you select a timeframe for your campaign and avoid missing deadlines for article or speaking submissions.

Two examples: February is “AMD Awareness Month,” and September hosts the international “AMD Awareness Week.” Many groups are receptive to having AMD talks during these times. Preparing a news release and/or using a public relations firm can help you get some traction with local television stations or publications to publicize your talk. It can increase your name recognition and may even lead to additional opportunities on TV or with national publications. Once you’ve done a good job with a few of these talks, you’ll soon develop a reputation and potentially become a “go to” person for future questions/stories about eye-related issues.

THE “HOW” OF YOUR CAMPAIGN

As a new retinal specialist, who is likely dealing with many other issues of growing your practice, how do you find the time and resources to plan, launch, and carry out such an ambitious campaign aimed at reducing missed AMD diagnoses? It can be challenging. But chances are you know a fellow retina colleague who can help. Networking is invaluable; attending the various retina meetings throughout the year can build upon the contacts you made through training. I recommend the American Society of Retina Specialists (ASRS) Business of Retina meeting that occurs every Spring, as this is a meeting focused purely on the practice management side of retina. It attracts nearly 500 managing retina practice physicians and administrators. You can also partner with local referring doctors or medical societies to share the burden of developing resources for a campaign. This has the side benefit of strengthening your relationship with these fellow colleagues.

Practice consultants and marketing specialists who work specifically with ophthalmology practices can also provide you with direction and expertise. Again, conferences like the ASRS Business of Retina meeting are invaluable for learning about these contacts. If you have the benefit of working near a university, hiring a marketing graduate student can be helpful. Obviously, this person may not know the clinical details, but he or she will know how to devise a plan and connect you with the technical expertise to develop the social media and technology aspects of the campaign.

The pharma rep whose company has an interest in AMD may also be a resource, able to supply you with educational materials and perhaps even sponsor a dinner or conference to help you educate local ophthalmologists and optometrists. These companies also may have grants available that can be used to help you develop an AMD educational program.

Other organizations have printed materials that can be shared. The ASRS, for example, has retina physician-authored material that can be printed free of charge and shared with your patients. The American Academy of Ophthalmology has AMD educational videos that can be purchased and played for patients in your office waiting room; the videos can even be custom-recorded with your own voice.

Ultimately, the depth of your AMD educational effort depends on you. They can consist of a one-time push over the course of AMD Awareness Month, with just a few presentations to the local community and your referral base, or they can comprise a full-time, ongoing dedication to make your local practice an “AMD Center of Excellence,” with a large campaign conducted together with a pharma/medical device company — complete with brochures, a web page, social media management, and press releases.

In either case, a good way to measure the effectiveness of your campaign is to track the number of referrals over time from each doctor or lecture. You should survey every new patient with questions such as, “Where did you hear about us?” or “Who referred you?” Other good ways to measure effectiveness are to track website hits and social media views or new followers.

WHY EDUCATE ABOUT AMD?

Better education could very well mean increased patient caseloads for the eyecare professionals in your community, including you. Importantly, you’ll be helping to create better informed patients, optometrists, and ophthalmologists, and increasing awareness about the leading cause of visual impairment in people older than age 50 in developed countries. You’re also building your practice’s reputation.

But the best answer to the question of why is simply to help prevent vision loss. Earlier AMD diagnosis means earlier intervention, and earlier intervention leads to better outcomes. It doesn’t get any clearer than that. NRP

REFERENCES

  1. Neely DC, Bray KJ, Huisingh CE, Clark ME, McGwin G, Owsley C. Prevalence of undiagnosed age-related macular degeneration in primary eye care. JAMA Ophthalmol. 2017;135(6):570-575.
  2. McDonald HR, Williams GA, Scott IU, et al. Laser scanning imaging for macular disease: a report by the American Academy of Ophthalmology. Ophthalmology. 2007; 114(6):1221-1228.
  3. Kandula S, Lamkin JC, Albanese T, Edward DP. Patients’ knowledge and perspectives on wet age-related macular degeneration and its treatment. Clin Ophthalmol. 2010;4:375-381.
  4. Woo JH, Au Eong KG. Don’t lose sight of age-related macular degeneration: the need for increased awareness in Singapore. Singapore Med J. 2008;49(11):850-853.
  5. Age-Related Macular Degeneration. American Society of Retina Specialists website. Available at https://bit.ly/2nzAvru ; last accessed Aug. 3, 2018.
  6. Ho AC, Albini TA, Brown DM, Boyer DS, Regillo CD, Heier JS. The potential importance of detection of neovascular age-related macular degeneration when visual acuity is relatively good. JAMA Ophthalmol. 2017;135(3):268-273.
  7. Zhao R, Camino A, Wang J, et al. Automated drusen detection in dry age-related macular degeneration by multiple-depth, en face optical coherence tomography. Biomed Opt Express. 2017;8(11):5049-5064.