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New Research: Do Electronic Medical Record (EMR) Systems Affect Adherence to Glaucoma Medication Regimens?

a view of the eye to check for glaucoma

Electronic medical record (EMR) systems, defined by the Department of Health and Human Services as "an electronic record of health-related information on an individual that can be created, gathered, managed, and consulted by authorized clinicians and staff within one health care organization," have the potential to provide substantial benefits to physicians, clinic practices, and health care organizations and improve the quality of patient care and safety.

Nevertheless, despite these myriad benefits, the possibility of medical error or misinformation persists. Most recently, researchers from Boston University School of Medicine have explored the ways in which EMR discrepancies may affect glaucoma medication adherence. According to the research team, patients with glaucoma typically have ever-changing drug therapy regimens involving multiple eye drop products; in addition to these complex regimens, inconsistent documentation in glaucoma patients' electronic medical records (EMRs) can also play a role in their medication adherence.

The authors conclude that "with the growing prevalence and incidence of glaucoma nationwide and the increasing presence of EMRs, inconsistent documentation in the EMR may be a contributing factor in patient [glaucoma] medication adherence. However, when inconsistencies are present, patients are more likely to follow their physician's verbal directions than the EMR handout. Even so, clinicians should be diligent in providing consistent medication documentation throughout the EMR to reduce non-adherence due to clinician error."

The research, entitled Electronic Medical Records and Glaucoma Medications: Connecting the Medication Reconciliation with Adherence, has been published in the Volume 10, 2016 edition of Clinical Ophthalmology, an international, peer-reviewed, open-access journal covering all subspecialties within ophthalmology. The authors are Thomas S. Bacon, Kenneth C. Fan, and Manishi A. Desai from Boston University School of Medicine, Boston, Massachusetts.

More about the Study from Clinical Ophthalmology

Excerpted from the study Introduction:

Appropriate documentation of treatment regimens within the electronic medical record (EMR) system is imperative for medical, legal, and financial purposes. In particular, the medication reconciliation component of the EMR has emerged as an important quality metric for incentive-based payments or penalties under the Affordable Care Act.

In order to fulfill these requirements, the health care provider must engage in the medication reconciliation process of reviewing a patient's most "complete and accurate medication list during each relevant encounter" as outlined by the American Academy of Ophthalmology and Department of Health and Human Services.

Patients requiring ophthalmologic care, and more specifically those with glaucoma, are subject to long-term medical management with frequently changing, multiple daily eye drop regimens. This poses challenges for the busy physician in documenting appropriately as well as for the patient in maintaining correct medication adherence.

At this point in time, it is unclear as to how EMR has impacted medication adherence. Specifically in the glaucoma literature, it is unclear if the medication reconciliation portion of EMR assists patients in adhering to their treatment regimens.

There is, however, a growing body of literature on demographic and social variables that impact medication adherence. Several retrospective studies have claimed that medication adherence is higher in females, elderly, and white patients. Additional prospective and cross-sectional studies have found conflicting results in that older age was associated with non-adherence or that age had no correlation at all.

[Editor's note: A retrospective study – such as this one – has limitations because it collects data from past records and does not follow up with patients in the present. A prospective study measures a group of individuals over time and follows up with study patients in the future. A cross-sectional study analyzes a population of subjects at one specific point in time.]

While the exact role demographics play in medication adherence is unclear, none of these studies have investigated the impact of the EMR medication reconciliation on medication adherence. Therefore, this study aims to establish the impact the medication reconciliation after-visit summary has on medication adherence as well as contribute to the [clarification] of associated demographic factors.

More about the Glaucoma/EMR Study

From the study summary and abstract:

Purpose: To evaluate consistency in documentation of glaucoma medications in the electronic medical record and identify which regimen patients adhere to when inconsistencies exist. Factors contributing to medication non-adherence are also explored.

Methods: Retrospective chart review of medication adherence encompassing 200 patients from three glaucoma physicians at a tertiary referral center over a 1-month period. Adherence was determined by the consistency between a patient's stated medication regimen and either the active medication list in the electronic medical record or the physician's planned medication regimen in the preceding clinic visit. Patient charts were also reviewed for patient sex, age, primary language, race, and total number of medications.

Results: A total of 160 charts showed consistency in documentation between the physician note and electronic medication reconciliation. Of those patients, 83.1% reported adherence with their glaucoma medication schedule. When there was a discrepancy in documentation (40 charts), 72.5% of patients followed the physician-stated regimen vs. 20% who followed neither vs. 7.5% who followed the medical record.

No difference in adherence was observed based on sex or total number of medications taken. Language, both English- and Haitian-speaking populations, as well as race – Caucasian, African-American, and Hispanic – had no impact on medication adherence. Patients over 80 years of age were more non-adherent as compared to other decades.

Conclusion: Inconsistent documentation between the electronic medical record physician note and medication regimen may contribute to patient medication non-adherence. Patients over 80 years of age were associated with higher rates of non-adherence, while sex, total number of medications, race, and language had no interaction with medication adherence.

Tips for Taking Your Glaucoma Eye Drops from VisionAware

By Ira Marc Price, O.D.

One of the reasons people cite for not following through with their prescribed treatment regimen for glaucoma is that it is difficult to put in their eye drops. If you have difficulty with eye drops, here are a few tips for getting them in your eyes instead of on your cheeks:

a man taking eye drops
  • Wash your hands before putting in your eye drops.
  • Initially, you might want to practice these techniques with artificial tears instead of using your actual glaucoma medication.
  • Be careful not to let the tip of the dropper touch any part of your eye.
  • Make sure the dropper stays clean.
  • If you are putting in more than one drop, wait at least two to five minutes before putting in the next drop. This will keep the first drop from being washed out by the second.
  • Start by lying down flat. Position the dropper directly over your eye and then close your eyes. Place a drop in the inner corner of your eyelid (the side closest to your nose). By opening your eyes slowly, the drop should fall right into your eye.
  • Keep your eye drops in the refrigerator. (Note: Most eye drops are fine to store at temperatures between 40 and 60 degrees Fahrenheit once they are opened.) This way, you can feel the cool drop as it falls onto your skin. If you are using a gel-based eye drop, then keeping it cool may make it difficult to squeeze out the drop. These drops are best kept at room temperature.
  • If the instructions say "Shake well before using," this is the time to do it.
  • Close your eyes gently and wait a few moments.
  • Gently blot around your eyes to remove any excess.

Adaptations to Help with Glaucoma Eye Drops

  • The Autodrop Eye Drop Guide holds the eye open and directs the drop, allowing for an accurate dosage. It is easily attached to any eye drop bottle. The attached cap closes the bottle when not in use. The Autodrop is reusable after cleaning. It is available from
  • The Autosqueeze Eyedrop Bottle Squeezer adds "levers" around the bottle to make squeezing easier and more controlled for persons with reduced grip strength, arthritis, or injury. The Autosqueeze fits snugly around the neck of most small plastic dispensing bottles, does not interfere with the cap opening and closing, and transfers easily to other bottles when needed. It is available from

Additional Information

Medical Updates

Meet Rebecca Sheffield, Ph.D., Senior Policy Researcher, American Foundation for Blind Public Policy Center

Rebecca Sheffield, Ph.D.

Rebecca Sheffield, Ph.D., is a Senior Policy Researcher with the American Foundation for the Blind (AFB) Public Policy Center in Washington, D.C. The AFB Public Policy Center collaborates with policy makers in Congress and the Executive Branch to ensure that Americans with vision loss have equal rights and opportunities to fully participate in society.

She also authors two important and helpful Public Policy Center publications: Research Navigator, a quarterly series that keeps readers informed of user-friendly facts and figures and the latest research pertaining to people with vision loss, and Statistical Snapshots, a one-stop, regularly updated source for statistical facts, figures, and resources about Americans with vision loss.

Maureen Duffy: Hello Dr. Sheffield. Thank you very much for taking the time to speak with us about your work with the AFB Public Policy Center. To begin, can you tell us about your professional path that led you to AFB?

Rebecca Sheffield: Sure! Thank you for inviting me. My path towards my current role really began when I decided to pursue my special education teaching certificate in Texas. For two years, I was the lead teacher in a self-contained elementary special education classroom, teaching students with severe/profound disabilities.

Through that position, I met one of the school district's itinerant teachers of students with visual impairments (called a TVI) who shared with me the process for earning my TVI certificate in Texas. Within six months, I started the coursework at Texas Tech University and began working as an itinerant TVI, serving a range of students ages 0-21 across several campuses in our large school district. I completed the TVI certificate program and continued on at Texas Tech to receive my master’s degree.

Rebecca Sheffield, Ph.D. receiving her doctorate

Meanwhile, Dr. Rona Pogrund, my advisor at Texas Tech, recommended that I apply to the National Leadership Consortium in Sensory Disabilities, a doctoral fellowship program funded by the federal Office of Special Education Programs. I was so excited (and quite a bit nervous!) when I found out that I was selected for the fellowship and admission to the Ph.D. program in Special Education at Texas Tech.

While a doctoral student, I became involved in many advocacy efforts, particularly to promote U.S. ratification of the United Nations Convention on the Rights of Persons with Disabilities. In the summer of 2013, I was fortunate to intern at the AFB Public Policy Center in Washington, D.C., an experience that led me to apply for the position of Senior Policy Researcher after my graduation in the summer of 2014.

And I would be remiss if I didn't also acknowledge that I have a very personal connection to the field. Although it doesn't relate directly to my career path, it makes me think that perhaps I was destined to be here.

Both of my grandmothers had visual impairment, and, in particular, my mom's mom, Ruth Peck, was a volunteer braille transcriber and President of the Atlanta Braille Volunteers. Her husband, my grandfather, Ed Peck was a volunteer for the Library of Congress National Library Service for the Blind and Physically Handicapped, repairing braillewriters and talking books. Even my mom volunteered as a braille transcriber when I was growing up, and I vividly remember spending time at my grandparents' home, listening to Grandma transcribe books upstairs and smelling the grease and oil of Grandpa repairing braille writers downstairs!

MD: Can you tell us more about your role as Senior Policy Researcher at American Foundation for the Blind?

RS: No two days are alike at AFB's Washington, D.C., Policy Center, but I will try to describe some of my main roles. With respect to policy, I assist and collaborate with Mark Richert, Esq., AFB's Director of Public Policy and Senior Advisor, Strategic Initiatives. Two of our current policy priorities include H.R. 3535, the Alice Cogswell and Anne Sullivan Macy Act and H.R. 729, the Medicare Demonstration of Coverage for Low Vision Devices Act.

the dome of the US Capitol building

We work to get the word out about these initiatives, plan call-in days and events, speak to other advocates, and meet with congressional staff. We also participate in a variety of cross-disability advocacy meetings and organizations in D.C., including the Consortium for Citizens with Disabilities, for which I co-chair the International Taskforce.

Policy and research frequently overlap, and I often spend time digging into statistics, legislation, and academic research in order to answer policy-related questions. Age Is Just a Number: Statistics about Seniors with Vision Loss, our recent Research Navigator, is a good example of this multi-purpose effort, since the statistics I shared about aging and vision loss are an essential part of the renewed national effort to change policies surrounding aging and vision loss. I have worked closely with Dr. Priscilla Rogers, the VisionAware Program Manager, on both policy and research activities related to the aging agenda.

Additionally, I work with AFB Tech and other organizations to apply for grants and conduct research on consulting projects, and I have a few other research projects in the works, collaborating with colleagues inside and outside of AFB.

I am also contacted frequently by members of the media, other grant writers, and other organizations in our field to answer questions such as "How many blind people are there in the United States?" Within AFB, I support all of our departments in survey design, research, and data analysis. This year I have presented, and plan to give, presentations for at least six conferences, and I also work with university personnel preparation programs to provide information and guest lectures for their courses.

MD: As you know, we professionals in the blindness field are asked – with increasing regularity – to provide data and research that can assure funders, policy makers, and government agencies that what we do actually produces results, including improved quality of life and independence. Anecdotes and stories about what we do are no longer sufficient, which I believe is a good trend. That is why I was very excited to read Age Is Just a Number: Statistics about Seniors with Vision Loss, your latest Research Navigator that focused on older adults in the United States, including estimates of vision loss. Can you summarize the most significant points for our VisionAware readers?

RS: This Navigator is the most recent in a series of summaries that I have written to explore and explain population statistics. Many authors have published great research and statistics in the field of blindness and visual impairment, but not a lot has been written about population statistics, and much of what has been written is a little difficult to comprehend if you do not have several statistics courses under your belt!

Thus, the Navigator is written to describe (as clearly as possible) some of the most essential aspects of important data. Often, as with the Age is Just a Number edition, I have to explain that there is a lot that we simply do not know.

With regard to statistics on aging and vision loss, I described:

MD: I was especially interested in your reporting of results by year of the National Health Interview Survey (NHIS). From my reading, the numbers and percentages of people who are 65+ with vision problems seem to be decreasing. Can you discuss that?

RS: Certainly. There are a few important points to consider when looking at this data. First, we should remember that this is self-reported data (not reports of numbers of people diagnosed with vision loss by a doctor) and that the "vision loss" question is asked pretty broadly: "Do you have trouble seeing, even when wearing glasses or contacts?" So we are talking about a very broad definition of "vision trouble."

National Health Interview Survey logo

Also, since the NHIS is based on a relatively small sample size, there is some room for estimation error. In 2014, the NHIS estimated that 13.5% of people age 65+ self-report having trouble seeing; however, the NHIS knows that if they were able to survey everyone in the United States, the "actual value" would probably be somewhere between 12.5% and 14.6%.

So in reality, this could be an increase or a decrease over the previous year. However, if we look at the trend over time (data is available from 1997-2014), we can see that the total number does seem to be going up and the percentage does seem to be decreasing for self-reported "vision trouble." For self-reported blindness, there does not seem to be a clear trend, and the margin of error (due to the smaller sample size) is even greater.

Unfortunately, these statistics are not very good for telling us why these trends are the way they are – so perhaps they raise more questions than they answer! Certainly the aging Baby Boom generation helps to explain the increase in total population numbers. Perhaps there is a difference in the willingness of Baby Boomers to self-identify as having vision trouble. Perhaps the fact that the NHIS does not count people living in nursing homes is playing a role?

Certainly, more research is needed to better understand these statistics. Looking at the data on specific eye conditions, such as the Vision Problems in the U.S. report, reminds us that the need for more supports, services, and research is certainly growing!

MD: It seems to me that it is quite difficult to gain a truly accurate and comprehensive picture of vision loss among older adults in this country, especially since people who reside in nursing homes or other institutions are not included in most of these estimates. My own research in nursing homes in the 1990s helped me to understand how vastly underreported vision loss was in these institutional settings. What do you think is the best way to gain a true picture of this population of older people?

RS: The best way for me to answer this is to give you an example from own academic research. Prior to coming to work at AFB, in order to complete my Ph.D., I conducted research and wrote a dissertation on quality of life for young adults who are blind.

For this research, I did not create or administer a survey; in fact, I did not analyze any statistics at all. I conducted in-depth, one-on-one interviews with young adults who were blind, purposefully choosing interviewees with diverse backgrounds and experiences. Over hours and hours of interviews, I sat back, asked as few questions as possible, and let them tell me their stories.

Then I transcribed the interviews and read the transcripts over and over to identify the most salient themes, especially themes that were present across all the interviewees. From a statistical standpoint, this is not the most reliable way to conduct research (I had a very small sample size of only six participants), and I cannot make strong claims that my results are generalizable to all other young adults who are blind.

However, when I take the rich and detailed information I gathered from these interviews and combine it with what we are learning from statistics, surveys, and other studies (called quantitative research), I believe that the stories and themes (called qualitative research) help to paint a much clearer picture about the lives and experiences of the very real people behind these numbers.

Over the past year at AFB, beginning with collecting feedback for the White House Conference on Aging in 2015, we have been gathering both quantitative and qualitative data in order to better understand the national trends and circumstances of older Americans with vision loss. While I hope readers will stay tuned to the statistics coming out of AFB, please also be on the lookout for the stories we have to share. And I encourage everyone who wants to better understand the lives of older people with vision loss to reach out and connect with the amazing people who have so many stories to tell and so much to teach us!

MD: Where would you advise professionals and researchers to begin when gathering information about our 65+ population in order to prompt policy change? I think many people simply don't know where to start because there are so many potential sources of information.

RS: That’s a great question. Of course I hope people will check out Statistical Snapshots and subscribe to our DirectConnect Newsletter, which includes the quarterly Research Navigator. Also, the Journal of Visual Impairment & Blindness will have a special issue on aging and vision loss later this year. However, there are certainly many additional resources available online.

An important factor to remember as you start to do this type of research is that many different researchers and publications are working from, and using, the same original data. So sometimes it seems like you may have encountered a new data source, but you are really just seeing someone else's presentation or analysis of the same data.

Vision Problems in the U.S. and the Eye Disease Prevalence Study Group

For example, one of my favorite resources, Vision Problems in the U.S. from Prevent Blindness, originated from a meeting in 2001 with the National Eye Institute. From this meeting, the Eye Disease Prevalence Study Group was formed, which worked on a meta-analysis (a type of research that combines data from many smaller studies) conducted across the U.S. in the 1990s.

These researchers together produced many publications, available in the April 2004 edition of JAMA Ophthalmology (formerly Archives of Ophthalmology). Although some organizations and researchers, particularly Prevent Blindness, have used Census data and statistical techniques to update the estimates, these earlier Eye Disease Prevalence Study Group publications remain central to much of the data available today about the prevalence of specific eye conditions among older adults in the United States. Another example of a publication from this data is The Silver Book by the Alliance for Aging Research, in association with the National Alliance for Eye and Vision Research.

The Vision Health Initiative at the Centers for Disease Control and Prevention (CDC)

Also, professionals and researchers should pay attention to the work of the Vision Health Initiative at the Centers for Disease Control and Prevention (CDC). Existing and upcoming reports from this team provide valuable insight – not only about existing data on vision and public health, but also about the challenges of conducting research in our field. With sponsorship from the CDC's Vision Health Initiative, the Institute of Medicine has recently undertaken a consensus study on vision and public health, which is also likely to produce valuable information for our field.

Additionally, through the Vision Health Initiative, the CDC has awarded funding for a four-year cooperative agreement to establish a national surveillance system for vision loss and eye health to NORC, an independent research organization at the University of Chicago (formerly the National Opinion Research Center). So while we must keep advocating to keep the questions we have in our national surveys and to ask for new data, there should be several exciting new sources for statistics and research in the near future!

Thank You to Dr. Rebecca Sheffield

We thank Dr. Sheffield for her support of VisionAware and for her skilled and enthusiastic research on behalf of blind and visually persons throughout the United States. You can email Dr. Sheffield at Keep in touch with ongoing research via the following resources:

In the News
Personal Reflections
Public Policy

Researchers Identify a Mechanism that May Explain Why Some People Experience Accelerated Diabetic Retinopathy and Vision Loss

The ARVO logo

New diabetes and diabetic retinopathy research from Harvard Medical School, via Investigative Ophthalmology & Visual Science, the official journal of the Association for Research in Vision and Ophthalmology (ARVO), has demonstrated an association between a defective myogenic response – the increase or decrease in blood pressure that serves to regulate a consistent blood flow within the vessels of the retina – and early, accelerated development of diabetic retinopathy (explained below) in people with type 1 [i.e., insulin-dependent] diabetes.

Although the study included a small number of subjects and addressed only type 1 diabetes, the research serves to identify a mechanism that may explain why some people develop diabetic retinopathy sooner than others. In addition, the authors state that these findings "provide a target for future study, which may lead to therapies to delay or prevent the development of accelerated diabetic retinopathy."

From Investigative Ophthalmology & Visual Science

This new diabetes research, entitled Defective Myogenic Response of Retinal Vessels Is Associated with Accelerated Onset of Retinopathy in Type 1 Diabetic Individuals, has been published as an open-source article in the April 2016 edition of Investigative Ophthalmology & Visual Science, the official journal of the Association for Research in Vision and Ophthalmology (ARVO). ARVO is an international organization that encourages and assists research, training, publication, and dissemination of knowledge in vision and ophthalmology, including low vision.

The authors are Francesco Tecilazich; Gilbert T. Feke; Sara Mazzantini; Lucia Sobrin; and Mara Lorenzi, who represent the following institutions: Schepens Eye Research Institute and Massachusetts Eye and Ear Infirmary at Harvard Medical School, Boston, Massachusetts.

About the Research

Excerpted from Researchers identify candidate biomarker of accelerated onset diabetic retinopathy at Science Codex:

Researchers … have shown an association between a defective myogenic response – the regulatory increase or decrease in blood pressure to keep blood flow within the vessels of the retina constant – and early, accelerated development of retinopathy in patients with type 1 diabetes. These findings identify one mechanism to explain why some patients develop diabetic retinopathy sooner than others. Furthermore, the findings provide a target for future study, which may lead to therapies to delay or prevent the development of accelerated onset diabetic retinopathy.

"In patients with a normal myogenic response, the retinal vessels constrict [i.e., become smaller] when increased pressure arrives, to maintain constant blood flow and avoid damage to the smaller vessels in the retina," said [study co-author] Mara Lorenzi, M.D. "But we saw that, in about half of the diabetic patients in our study, the vessels did not constrict. In fact, paradoxically, some patients' vessels dilated [i.e., opened up or became larger], and the blood flow to the retina was increased. This becomes a mechanism of damage for the small vessels, because these tiny, delicate capillaries are exposed to a big flow of pressure that can lead to the little hemorrhages and fluid leakage that are characteristic of diabetic retinopathy."

The study included a small prospective study, in which the researchers closely followed 17 patients with type 1 diabetes whose myogenic responses had been measured four years prior. In approximately half of those patients, the researchers had observed defective myogenic responses. Five out of seven patients with defective myogenic responses developed accelerated diabetic retinopathy.

[Editor's note: A prospective study measures a group of individuals over time and follows up with the study subjects in the future. A cross-sectional study, on the other hand, analyzes a population of subjects at one specific point in time.]

The study also included a different group of patients with type 1 diabetes who had just developed retinopathy. Among these patients, the defective myogenic response was found only in those in whom retinopathy had appeared after a short duration of diabetes (fewer than 15 years of diabetes).

With the knowledge gained from the new studies, the researchers hope to target the defective myogenic response and develop therapies to prevent the development of accelerated diabetic retinopathy in this population. A larger study is needed to test the predictive capability of this abnormality. "Now, we have a target to be investigated for the development of drugs or interventions to halt or stall the onset of clinical retinopathy," Dr. Lorenzi said.

About Diabetic Eye Disease

Diabetic Retinopathy

Although people with diabetes are more likely to develop cataracts at a younger age and are twice as likely to develop glaucoma as people who do not have diabetes, the primary vision problem caused by diabetes is diabetic retinopathy, the leading cause of new cases of blindness and low vision in adults aged 20-65:

NEI example of seeing with diabetic retinopathy: many blind spots and overall blurriness

What a person with diabetic retinopathy sees

  • "Retinopathy" is a general term that describes damage to the retina.
  • The retina is a thin, light-sensitive tissue that lines the inside surface of the eye. Nerve cells in the retina convert incoming light into electrical impulses. These electrical impulses are carried by the optic nerve to the brain, which interprets them as visual images.
  • Diabetic retinopathy occurs when there is damage to the small blood vessels that nourish tissue and nerve cells in the retina.
  • "Proliferative" is a general term that means to grow or increase at a rapid rate by producing new tissue or cells. When the term "proliferative" is used in relation to diabetic retinopathy, it describes the growth, or proliferation, of abnormal new blood vessels in the retina. "Non-proliferative" indicates that this process is not yet occurring.
  • Proliferative diabetic retinopathy affects approximately 1 in 20 individuals with the disease.

Four Stages of Diabetic Retinopathy

According to the National Eye Institute, diabetic retinopathy has four stages:

  • Mild non-proliferative retinopathy: At this early stage, small areas of balloon-like swelling occur in the retina's tiny blood vessels.
  • Moderate non-proliferative retinopathy: As the disease progresses, some blood vessels that nourish the retina become blocked.
  • Severe non-proliferative retinopathy: Many more blood vessels become blocked, which disrupts the blood supply that nourishes the retina. The damaged retina then signals the body to produce new blood vessels.
  • Proliferative retinopathy: At this advanced stage, signals sent by the retina trigger the development of new blood vessels that grow (or proliferate) in the retina and the vitreous, which is a transparent gel that fills the interior of the eye. Because these new blood vessels are abnormal, they can rupture and bleed, causing hemorrhages in the retina or vitreous. Scar tissue can develop and can tug at the retina, causing further damage or even retinal detachment.

Diabetic Macular Edema

Diabetic macular edema [edema = a swelling or accumulation of fluid] (DME) can occur in people with diabetes when retinal blood vessels begin to leak into the macula, the part of the eye responsible for detailed central vision. These leakages cause the macula to thicken and swell, which, in turn, creates a progressive distortion of central vision.

Although this swelling does not always lead to severe vision loss or blindness, it can cause a significant loss of central, or detail, vision, and is the primary cause of vision loss in people with diabetic retinopathy. DME can occur at any stage of diabetic retinopathy, but it is more likely to occur as the disease progresses.

You can learn more about diabetes and diabetic retinopathy at Introduction to Diabetes and Diabetic Retinopathy at the VisionAware website.

More about the Research from Investigative Ophthalmology & Visual Science

From the article abstract:

Purpose: We seek to identify pathogenic [i.e., causing, or capable of causing, disease] mechanisms for diabetic retinopathy that can become therapeutic targets beyond hyperglycemia and hypertension.

We investigated if a defective myogenic response of retinal arteries to increased perfusion pressure [i.e., the passage of a fluid through the vessels], which exposes capillaries to increased pressure and flow, is associated with the onset of clinical retinopathy.

Methods: We examined prospectively the incidence of retinopathy in type 1 diabetic individuals tested 4 years earlier for the retinal arterial myogenic response, and in a cross-sectional study the prevalence of defective myogenic response in type 1 patients who had diabetic retinopathy. Among these, we contrasted early-onset to late-onset retinopathy. We measured the myogenic response using a laser Doppler blood flowmeter after a change in posture from sitting to reclining, which increases retinal perfusion pressure.

Results: Five of seven participants who 4 years prior had a defective myogenic response had now developed clinical retinopathy; as compared with only one of six participants who 4 years prior had a normal response. In the cross-sectional study, all participants had normal retinal hemodynamics at steady state. In response to the postural change, only the [early-onset diabetic retinopathy] group showed defective myogenic response and abnormally high retinal blood flow.

Conclusions: In type 1 diabetic patients, a defective myogenic response of retinal arteries to pressure is not required for the development of clinical retinopathy, but is prominently associated with an accelerated onset of retinopathy.

The study authors also concluded with the following observations:

The main limitation of this study is the small number of patients tested. Additionally, the study addressed solely patients with type 1 diabetes who did not take vasoactive drugs; thus, it is unknown whether the findings can be extended to the much more common setting of patients with type 2 (non-insulin-dependent) diabetes, often taking drugs for systemic hypertension.

This is, however, not unlikely, because a defective myogenic response of retinal vessels to a pressure stimulus (increased systemic blood pressure induced by isometric exercise) has been noted also in type 2 diabetic patients, some treated with vasoactive drugs, who had retinopathy with or without macular edema.

[Editor's note: Vasoactive drugs are a class of medications that have the effect of either increasing or decreasing blood pressure and/or heart rate.]

Our new observations that a defective myogenic response to pressure of retinal vessels can be an accelerator of retinopathy, together with the observations that a defective myogenic response to pressure [also] is prevalent in type 2 diabetes, and is present in sight-threatening retinopathy, call for a definitive longitudinal cohort study.

If a fully powered study confirmed that a defective myogenic response predicts an accelerated onset and/or course of diabetic retinopathy, there will be rationale and impetus to developing targeted drugs. In the meantime, our findings renew the emphasis on monitoring and treating aggressively in our patients any increase in systemic blood pressure, because a defective vascular constriction magnifies widely the effects of any increment in blood pressure on retinal vessels.

VisionAware will continue to report the results of this research as they become available.

Additional Information

Diabetes and diabetic retinopathy
Low Vision
Medical Updates

Our Readers Want to Know: Can You Tell Me More about Nutritional Supplements for Age-Related Macular Degeneration?

Editor's note: One of the many benefits associated with an online information center and website, such as VisionAware, is the ability to track readers' search terms [i.e., information readers are seeking as they search the Internet] as well as answer specific reader inquiries via email. Every month, questions about macular degeneration (AMD), including risks, treatments, and helpful resources, consistently rank among the top inquiries:

  • I am 76 years old and have dry AMD in my left eye and wet in the other, first diagnosed in 2009. Can supplements help me or am I wasting my money?
  • I am currently using [a pharmacy chain's brand] AREDS Eye Health Multivitamins for age-related macular degeneration in both eyes. Is there another – or different – supplement I should be taking?

An Answer from Lylas G. Mogk, M.D.

Lylas G. Mogk, MD

Dr. Mogk is the is the author of Age-Related Macular Degeneration (AMD) on the VisionAware website; founding director of the Center for Vision Rehabilitation and Research, part of the Department of Ophthalmology at the Henry Ford Health System in Michigan; and co-author, with her daughter Marja Mogk, Ph.D., of Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight.

She is the former chair of the American Academy of Ophthalmology Vision Rehabilitation Committee; current chair of the Michigan Commission for the Blind, the advisory body for the Michigan Bureau of Services for Blind Persons; and Board member of the National Accreditation Council for Blind and Low Vision Services. She speaks regularly to physicians, vision rehabilitation specialists, occupational therapists, and community organizations nationwide about AMD and vision rehabilitation.

The First Age-Related Eye Disease Study (AREDS)

The first Age-Related Eye Disease Study (AREDS) was a major clinical trial sponsored by the National Eye Institute to:

  • Learn more about the history of, and risk factors for, age-related macular degeneration (AMD) and cataract;
  • Evaluate the effect of high doses of antioxidants and zinc on the progression of AMD and cataract.

Results from the first AREDS trial, which were reported in October 2001, indicated that five years of supplementation with high doses of antioxidant vitamins, copper, and zinc reduced the risk of developing advanced AMD in 30% of individuals in the study who took the supplements and had already-existing moderate to advanced dry or wet AMD.

The original AREDS formulation included:

  • 500 milligrams (mg) of vitamin C
  • 400 international units of vitamin E
  • 15 mg beta-carotene (for non-smokers only)
  • 80 mg zinc as zinc oxide
  • 2 mg copper as cupric oxide (to avoid anemia with high zinc intake)

The Second Age-Related Eye Disease Study (AREDS2)

In May 2013, The National Eye Institute concluded the Age-Related Eye Disease Study 2 (AREDS2), which tested several changes to the original AREDS formulation:

  • The primary goal of the AREDS2 study was to determine if (a) adding omega-3 fatty acids or (b) lutein and zeaxanthin (the anti-oxidants found in dark green leafy vegetables) to the original AREDS formulation would make it more effective for reducing the risk of advanced age-related macular degeneration (AMD) and cataract.
  • The AREDS2 research group also substituted lutein and zeaxanthin for beta-carotene, which prior studies had associated with an increased risk of lung cancer in smokers.

The researchers concluded that while omega-3 fatty acids had no effect on the formulation, lutein and zeaxanthin together appeared to be a safe and effective alternative to beta-carotene. Therefore, the addition of lutein and zeaxanthin to, and the subtraction of beta carotene from, the AREDS supplement formula was recommended by AREDS2.

The AREDS2 formulation now includes:

  • 500 milligrams (mg) of vitamin C
  • 400 international units of vitamin E
  • 80 mg zinc as zinc oxide
  • 2 mg copper as cupric oxide (to avoid anemia with high zinc intake)
  • 10 mg lutein
  • 2 mg zeaxanthin

Be sure to talk with your doctor before adding any nutritional or vitamin supplements to your diet. If you don't have AMD and wish to take nutritional supplements, take a good multiple vitamin/mineral combination with additional lutein and omega-3 fatty acids. The AREDS formula is not recommended for persons who do not have macular degeneration because it contains a high dose of zinc.

A Cautionary Note, However

There is some new evidence that individuals whose AMD progression is slowed by the AREDS supplements were of a particular genetic makeup and that the supplements may speed AMD progression in those with a different genetic makeup.

This has prompted some scientists to call for genetic testing of everyone with macular degeneration before prescribing supplements, but the evidence is not sufficient for all scientists to agree on this. Individuals should discuss this with their own eye care specialists.

Something New: Mesoxanthin and MacuHealth

John Nolan, Ph.D., came from Ireland to speak at our hospital by invitation of the MacuHealth company and I found his research to be very solid and convincing. While the MacuHealth company paid for his research, Dr. Nolan stated that he agreed to do the research only on the basis that he would publish his findings no matter what they revealed.

What he showed was that another cousin of lutein and zeaxanthin named "mesoxanthin" is actually the most active of the three specifically in the macula and that the combination of lutein, zeaxanthin, and mesoxanthin is what's needed. That's what the MacuHealth supplement contains.

Mesoxathin has not heretofore been commercially available and the MacuHealth company now has the sole right to manufacture and distribute it. It has not been subjected to a randomized, masked clinical trial, so whether – and to what degree – it may be helpful is unknown. It is unlikely to do harm, however, and the research suggests that it may help.

Additional Information about Macular Degeneration

Clinical Trials
Low Vision
Macular Degeneration
Readers Want to Know

Charles Bonnet Syndrome: Visual Hallucinations Are My Constant Companions by VisionAware Peer Advisor Sheila Rousey

Sheila Rousey and her guide dog

Guest blogger and VisionAware Peer Advisor Sheila Rousey is an educator, assistive technology specialist, and certified braille transcriber. With a Master's degree in Special Education from Clemson University, Sheila has provided Interrelated Special Education Instruction in the public school setting; Parent Advisor support for the Georgia Parent Infant Network for Educational Services (PINES); and instruction at the college level for students who require assistance with developmental studies in preparation for more advanced college-level work.

She also has Marfan syndrome, a congenital connective tissue disorder that can manifest itself in the body in many ways. In Sheila's case, she was born with cataracts and microphthalmia [i.e., smaller eyes and eye sockets]. After surgery to remove her cataracts, Sheila developed glaucoma and – later on – retinal detachments. You can read more about Sheila's life and work at Sheila Rousey: Parent, Educator, Technology Specialist on the VisionAware website.

For the past three years, as a consequence of her vision loss, Sheila has experienced Charles Bonnet Syndrome (CBS), a condition that causes vivid, complex, recurrent visual hallucinations, usually (but not exclusively) in adults and older adults with later-life vision loss from macular degeneration, diabetic retinopathy, and glaucoma. The visual hallucinations associated with CBS can range from animated, colorful, dreamlike images to less complicated visions of people, animals, vehicles, houses, and other everyday items. It has long been difficult, however, to determine the actual numbers of adults with vision loss who are affected by CBS, since few people who experience these hallucinations are likely to discuss them with family members, friends, or physicians.

Now, a recent Canadian study indicates that visual hallucinations are experienced by approximately 1 in 5 persons with vision loss, warranting greater awareness of the phenomenon among all vision health professionals and their clients, consumers, and patients. Says Sheila, "The research was right on target with so many of their findings. I am really pleased that the subject of CBS is finding its way into conversation. Hopefully the medical community will take a more serious look at the findings and visually impaired people will no longer only learn of it as a result of shared experiences through support groups.

This is Sheila's story about living, and coping, with Charles Bonnet Syndrome.

Living with Charles Bonnet Syndrome

For a little more than three years now, I have experienced a most fascinating and somewhat stressful aspect of losing my vision. For most of us, the idea of losing one's eyesight brings with it all sorts of challenges, fears, and doubts. But what happens when the physical structures of the eye no longer function, yet one still has the ability to see vivid colors, objects, shapes, complex mathematical equations, and words whose letters are reversed? For readers who are curious about this fascinating condition known as Charles Bonnet Syndrome (CBS), I would like to share my personal experience with you.

My Hallucinations Began

After experiencing years of low vision and finally three failed corneal transplant surgeries, I was left with very little remaining light perception. As my vision decreased with each passing day, I began to notice several random vividly-colored objects that appeared around me. After a day or so, the instance of these hallucinations increased to the point that they lasted all of my waking hours. These random objects constantly morphed into changing shapes that seemed to move closer and become larger and then move farther away and become smaller as they positioned themselves onto some sort of illuminated grid. As I concentrated on what my brain was showing me, I also observed very complex mathematical equations.

an example of Charles Bonnet-type visual hallucinations

As I tried to think about what the images meant, they would change slowly into other vividly-colored shapes, objects, words, or single letters of the alphabet. (See an example at left.) As my mind's eye showed me words and sentences, I noticed that the letters within words were reversed. However, single letters of the alphabet that appeared as a result of an object morphing into a letter or number was not reversed. It was as if my brain could not process entire words correctly within sentences, but could correctly process single letters or numbers.

In all of my hallucinations, the background was very dark, thus making the shapes and objects seem as though they were brightly illuminated. It was very difficult to ignore them because the colors were so vivid. And closing my eyes did not make the hallucinations go away. There is something very unsettling about having one's eyes closed and yet still having the ability to see things clearly. Unlike hallucinations associated with dementia or some neurological disorders, the hallucinations only affected the visual processing part of my brain. I did not experience any auditory hallucinations.

Once the hallucinations began, they became a constant part of my day. From the first moments of waking until the time I finally fell asleep at night, these vivid colors and shapes were ever-present.

A Eureka! Moment in My Vision Loss Support Group

For several months after the hallucinations began, I was very hesitant about sharing my experiences with my family members. And I only did so after attending a support group meeting for visually impaired adults. During the meeting, one of the group participants mentioned her experience with Charles Bonnet Syndrome.

Although the types of hallucinations that she spoke of were not like the ones I was experiencing, she explained how they were having an impact on her life that these hallucinations were common among people who had more serious vision loss. I was so relieved. I remember sitting there thinking, Oh gosh, that is what is going on with me. Even though I knew absolutely nothing about Charles Bonnet Syndrome at that time, it felt really good knowing that what I was experiencing was something that could be shared with others – and that there was a reason for what I was experiencing.

Searching for Information

As soon as I returned home, I went to my computer immediately and began searching online to learn as much as I could about Charles Bonnet Syndrome. I found several very informative articles that provided a brief history of Charles Bonnet Syndrome, as well as some of the causes and symptoms of CBS.

a window reflecting a large blue moose

An image of a large blue moose reflected in a window

I was particularly interested in knowing more about the hallucinations and learned that there are basically two types: simple hallucinations or complex hallucinations of people, animals, landscapes, and other objects.

My hallucinations were simple ones, since they were more like two-dimensional drawings and shapes with vivid colors. I also read that CBS hallucinations can reflect our life experiences. My seeing words, sentences, and complicated mathematical equations makes perfect sense, since I had taught developmental-level courses in mathematics, English, and reading through our local technical college.

The hallucinations described by the participant in my support group could be characterized as complex. She explained that she could see dogs and people walking toward her, along with deep holes within the sidewalk that she had to avoid during her daily walks. She was able to diminish the effects of her hallucinations by looking away quickly and then focusing on what she was originally looking toward.

An Appreciation and Understanding of My Constant Companion

Now that I have a better understanding of my constant companion with Charles Bonnet Syndrome, I have come to appreciate the gift of my ability to enjoy vivid colors, even though I am blind with no light perception now. However, there are times when I find the hallucinations to be very distracting and have not found a solution for getting rid of them. Bedtime is particularly frustrating when I am ready for the lights to be turned out and my brain just does not get the message. It is probably good that I can sleep with the lights on.

I have also noticed that when I am actively engaged in listening to music or listening to a good book, the hallucinations are very active and vivid. I have found that exercises such as tandem bicycling, swimming, and brisk walking do somewhat diminish the vivid colors and movements of the objects within the hallucinations.

Since there is no known cure for CBS, I have been trying to keep a personal journal entry for those days when the hallucinations are more or less active, as well as environmental factors that may affect the intensity of them. It is so very amazing how we are able to adapt to our situations and learn from them. Hopefully, sharing my experiences relating to Charles Bonnet Syndrome with others will remove the negative ideas about hallucinations that have been associated historically with other conditions – such as epilepsy, brain tumors, dementia, or mental illness – that can produce negative images and stereotyping of people with Charles Bonnet Syndrome.

Additional Information

Diabetes and diabetic retinopathy
Low Vision
Macular Degeneration
Personal Reflections

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