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Meet Dr. Gislin Dagnelie and Dr. Duane Geruschat: Pioneers in the Study of Restored and Prosthetic Vision

Gislin Dagnelie, Ph.D

Gislin Dagnelie, Ph.D., is an Associate Professor of Ophthalmology in the Johns Hopkins University School of Medicine and the associate director of the Lions Vision Research and Rehabilitation Center, a division of the Johns Hopkins Wilmer Eye Institute. His work over the last 20 years has been supported by grants from the National Institutes of Health, National Science Foundation, Foundation Fighting Blindness, and several companies developing ophthalmic devices and visual prosthetics.

Dr. Dagnelie is a native of the Netherlands, where he earned a Ph.D. in medical physics at the University of Amsterdam. In 1986, he came to the Wilmer Eye Institute for research in retinitis pigmentosa, an interest he is pursuing to this day.

He has been the Center Principal Investigator (PI) for clinical trials of the Optobionics Artificial Silicon Retina (2004-2007) and the Second Sight Argus™ II retinal implant (2007-present). Since the clinical introduction of the Argus II in early 2014, Dr. Dagnelie has been managing the retinal implant program at Johns Hopkins, and acted as the Center PI for several follow-up studies of Argus II use in patients' daily lives. His principal research effort is in understanding and measuring to what extent individuals with minimal vision can make effective use of that vision.

Duane Geruschat, PhD

Duane Geruschat, Ph.D., specializes in rehabilitation research with persons who are blind and visually impaired. His primary interest is in low vision orientation and mobility. He is a certified orientation and mobility specialist (COMS) and a certified low vision therapist (CLVT).

His involvement with prosthetic [i.e., artificial] vision began in 2004 with a product developed by Optobionics. Since 2009, Dr. Geruschat has been involved with Second Sight Medical Products, Inc., helping them to develop functional assessments and a rehabilitation curriculum that low vision therapists and orientation and mobility instructors can use when teaching patients to use the Argus II Retinal Prosthesis System.

Dr. Geruschat served as the Editor-in-Chief of the Journal of Visual Impairment & Blindness from 2005-2012. He is the recipient of numerous awards, including the Corinne Kirchner Award from the American Foundation for the Blind for lifetime achievement in blindness and low vision research, and the Outstanding Contributions in Research and Literature in Low Vision Award from the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER).

Some Background on Restored Vision

the JVIB logo

During the past several years, there has been much "buzz" in the popular press about the capabilities of the so-called "bionic" eye, described variously as "miraculous," "restoring sight," and "letting me see again." At VisionAware, we have followed the development of "bionic" or "prosthetic" vision closely, avoiding hyperbole and striving to report factual, research-based information about the limitations of restored vision.

Now, in the January-February edition of the Journal of Vision Impairment & Blindness, in a groundbreaking article entitled Restoration of Vision Following Long-Term Blindness: Considerations for Providing Rehabilitation, Dr. Geruschat and Dr. Dagnelie analyze the current state-of-the-art in vision restoration and concentrate more specifically on the kinds of visual gains produced by the Argus II Retinal Prosthesis.

They draw on their shared background in the rehabilitation of native low vision [i.e., vision loss resulting from age-related macular degeneration, diabetes, glaucoma, and retinitis pigmentosa, for example] and of restored vision, comparing and contrasting traditional rehabilitation for low vision with a new challenge: rehabilitation of restored low vision following decades of blindness.

The Argus II was developed by Second Sight Medical Products, Inc., of Lausanne, Switzerland and Sylmar, California to treat adults with severe to profound retinitis pigmentosa (RP). It consists of the following components: (a) a small video camera, (b) a transmitter mounted on a pair of eyeglasses, (c) a video processing unit (VPU), and (d) an artificial retina (the implanted retinal prosthesis, which is an array of electrodes).

You can learn more about the Argus II system at The Argus II Retinal Prosthesis (Bionic Eye) Is Safe, Effective, and Improves Visual Function on the VisionAware blog.

A VisionAware Interview with Dr. Gislin Dagnelie and Dr. Duane Geruschat

Maureen Duffy: Hello Dr. Dagnelie and Dr. Geruschat. Thank you very much for taking the time to speak with us about your research in restored vision and your work with the Argus II Retinal Prosthesis System. To start, can you tell our readers more about "restored vision," including how it differs from low vision?

Gislin Dagnelie: When we talk about restored vision, it suggests we can repair the retina to do all the things it previously did, with rods and cones that make the right connections to secondary cells, known as bipolar cells, and those in turn making connections to the retinal ganglion cells that send signals to the brain.

the Argus 2 system

Components of the Argus II
Retinal Prosthesis System

Unfortunately, that's not how it works. The electrodes on the implant stimulate the bipolar cells and ganglion cells, but they don't make distinctions about which cells they are stimulating. It's like trying to play a melody on the piano wearing boxing gloves. As a result, restored vision looks very different from native vision, more like blurry shadows moving around, and learning to understand this blurry vision takes a lot of practice.

Duane Geruschat: Prosthetic vision, specifically from a retinal chip implant, is flashing lights and possibly light patterns. This is potentially dramatically different from severely reduced native vision where you may see shadows, contrast, brightness, and motion. The light stimulation provided by a retinal implant has little, if any, relationship to what you have stored in your visual memory. Recipients are most likely developing new visual memories of things they are viewing.

MD: I'm also interested to know more about your backgrounds, including how you came to be involved in low vision – and now restored vision – research.

Gislin Dagnelie: I'm a physicist by training, but I specialized in a sub-field called medical physics, that is, applying the models and measurement methods used by physicists to understanding the human body and senses. In 1986 I came to Johns Hopkins from the University of Amsterdam and joined a research project trying to understand how vision changes in retinitis pigmentosa and other types of retinal degeneration. Our current work with retinal implants stems from that research, spurred on by advances in micro-electronics and retinal surgery.

Duane Geruschat: My background is in orientation and mobility as a Certified Orientation and Mobility Specialist (COMS) and in low vision as a Certified Low Vision Therapist (CLVT). I began my career working in a low vision clinic, doing traditional low vision optical device instruction and environmental modifications. Gradually, I moved into research and have spent the past 25 years as a full-time researcher, mostly in the area of low vision and mobility.

I have spent a lot of time on street corners, monitoring eye movements of pedestrians with low vision as they try to cross the street and I have done a lot of work with the perceptual judgements we humans have to make to determine if we have enough time to cross the street prior to the arrival of an oncoming car. For the past decade I've become more and more involved with retinal implants, having supported the development of functional assessments, instructional curricula, and continuing education programs for service providers.

MD: In your article, you discuss the psychology of vision restoration, including how the simple phrase "I can see again" has a variety of meanings for people who have experienced restored vision via the Argus II. Can you elaborate on that for our readers?

Kathy standing in a red shirt wearing the Argus II system

A user of the Argus II
Retinal Prosthesis System

Gislin Dagnelie: I think of restored vision as a very personal and emotional experience. For some, it may be the sense of independence that even a little bit of sight gives them, like seeing crosswalk lines; for others, it is the social aspect of being able to locate people walking by. Almost every Argus II user can give you an example like that, something that really brought home the impact of even a little vision that had been missing for years.

Duane Geruschat: Retinitis pigmentosa (RP) is a unique condition, in that there is no medical treatment, it is progressive, and it ultimately leads to blindness. Patients live with this information and the experience of losing their sight over many decades. The average Argus II user has been blind for 15 years. With no expectation of ever seeing anything again, even the limited vision provided by the Argus II can have major impact on a person. The phrase "I can see again" says nothing about what they see or how they use it; instead, it is the emotional response from someone with the life history that I just described. Seeing again with no expectation of ever seeing again is a powerful experience for many of these users.

MD: I was also interested to read this: "...the reintroduction of sight can be experienced by some people as a 'resetting of the clock,' an experience that returns them to a world with limited visual input following years of total blindness. One of the key consequences of this timeline is that the reintroduction of ultra-low vision results in the vision becoming a supplement to blindness skills for the purpose of enhancing independence." What is "ultra-low vision," exactly?

Gislin Dagnelie: Most people who have low vision can still use their vision for some tasks, either to get around, or to see large objects and read with high magnification. When we use the term ultra-low vision, we are referring to people who can still tell light from dark, maybe tell where the light is coming from, or see moving lights or shapes. But they can't really tell what the shapes are, unless they have some other information: sound, smell, touch, context. If you're standing on a subway platform, you don't need much vision to see the train roll in and come to a stop, and you may be able to tell where the open doors are.

Duane Geruschat: For the reader who is a provider of blindness services, you know that at times it is difficult to teach blindness skills because the person is struggling to use their vision. The remaining vision can, at times, make it more difficult to do activities of daily living. So we in blind rehabilitation seek out environments and tasks where the remaining vision cannot be used, so as to teach non-visual skills.

This can be challenging because the person often experiences this as "taking away their vision" and they aren't happy. By way of comparison, the user of the Argus II has been functionally blind for over a decade. Most have had a full course of blind rehabilitation and can accomplish most tasks of daily living with no eyesight. Now we are reintroducing a small amount of eyesight, but the difference here is that the person has good blindness skills so we are now trying to figure out how to incorporate this new eyesight with good blindness skills, while what we are used to doing is teaching blindness skills to someone who is losing eyesight.

MD: Can you give us an update on the status of the Argus II development? And what next steps may be on the horizon for vision restoration in general?

Gislin Dagnelie: The Argus II is limited by the large size of the electrodes, compared to the scale of the retinal cells it is stimulating, so it's not going to get dramatically better. But some improvements are possible – for example, seeing a little more detail, or better defined shapes – especially by combining the stimulation from different electrodes in different ways. Some changes to accomplish that are already in the works.

As for vision restoration in general: Everyone talks about gene therapy and stem cells, both of which would actually repair the network of cells in the retina. Each of those approaches has limitations, and how severe those are will not be known until those approaches are used in patients. For gene therapy, it is already known that the results may wear off, and that the best results are obtained by treatments before a lot of vision is lost. Whatever approach you look at, it's likely to take several decades to become fully developed. The retina is an amazing network of many different kinds of cells, and restoring it once the network is broken up is extremely difficult, no matter what approach you use.

Duane Geruschat: I think of the future in the context of how people use the new vision. A larger visual field would be helpful. Right now the Argus II has a visual field of 18 degrees, which is quite small. As described by Dr. Dagnelie, it is doubtful they will be able to improve acuity by reducing the size of the electrode, but if they could increase the size of the visual field, then I would expect to see an impact on visual abilities. The great potential advantage of gene therapy and stem cell treatments is that the user would have vision that is potentially much more natural. While people certainly learn to interpret the light patterns of the Argus II, I assume that more natural vision would be preferred by most people.

MD: What do you regard as the next great frontier in vision science? I'm always interested in what practicing vision scientists have to say about the future of vision research.

Gislin Dagnelie: I'm actually very curious to see how well truly artificial vision can work; that is, computer-based analysis of the visual world that is good enough to steer robots or cars. Artificial vision exists, for very specific and limited tasks, but to make it good enough so it can support autonomous decision-making, that's a real challenge. Once it gets to that point, we may realize that restoring human vision is not as important as we thought it was, even though it will remain a dream worth pursuing.

Duane Geruschat: Most of the work in this field occurs from the eye itself to the optic nerve. This is where the actual damage to the eye has occurred. So the treatments are designed to minimize the impact of the eye disease. The reason for this, of course, is that it's easiest to address vision early in the process of seeing. The next big area of study may be in cortical stimulation. At least in theory, you could bypass the entire eye/optic nerve and provide the information directly to the visual cortex at the base of the brain. This is by far the most challenging approach, which is why few research groups are working on it, but over time this may be an exciting area of research for young researchers.

MD: We thank Dr. Dagnelie and Dr. Geruschat for their support of VisionAware and for their research on behalf of blind and visually persons worldwide. You can read more about the Argus II Retinal Prosthesis System at VisionAware, including a first-person account from an Argus II pioneer.

Additional Information at VisionAware

Argus II image provided by Second Sight Medical Products, Inc. Used with permission.


Topics:
Assistive Technology
Low Vision
Personal Reflections
Orientation and Mobility
Technology
Getting Around
Medical Updates
Clinical Trials
Environmental assessment and modification
Retinitis Pigmentosa

VisionAware Response: The White House Conference on Aging Final Report

Priscilla Rogers wearing a blue shirt

Guest blogger Priscilla (Pris) Rogers, Ph.D. is the Program Manager for VisionAware and co-author of Aging and Vision Loss: A Handbook for Families. Her other works include Self-Advocacy Skills Training for Older Individuals Who Are Visually Impaired and Solutions for Success: A Training Manual for Working with Older People Who Are Visually Impaired. She has an M.A. degree in gerontology and a Ph.D. in special education with an emphasis in vision and aging.

First, Some Background and an Overview

The White House Conference on Aging (WHCOA) took place on July 13, 2015. It was an historic occasion that occurs once a decade. The 2015 conference was the first to take place on a national stage with the opportunity for people across the nation – and even the world – to listen in and participate through social media, including a Twitter feed @WHAging that enabled virtual attendees to ask questions and make comments.

2015 White House Conference on Aging logo

The American Foundation for the Blind's (AFB) Letter to the President: 2015 White House Conference on Aging articulated major WHCOA issues related to aging and vision loss. AFB and the 80+ agencies that signed on to the letter emphasized the need for a systemic approach to ensure that older Americans who are blind or visually impaired are able to (a) receive the training in independent living they need to carry out everyday tasks, (b) obtain critical technologies to enhance their health, independence and safety, and (c) access appropriate support services, such as transportation.

A Summary of the White House Conference on Aging Issues and Initiatives

In A Summary of the White House Conference on Aging Issues and Initiatives: Part One, Pris described the major issues and initiatives addressed during the 2015 White House Conference on Aging (WHCOA). In Part Two, she summarized the conference initiatives related to aging and vision loss addressed by the American Foundation for the Blind's Letter to the President. In Part Three, Pris concluded her discussion of the conference initiatives with additional remarks related to aging and vision loss that were also addressed in AFB's Letter to the President

The VisionAware Response to the White House Conference on Aging Final Report

We applaud the White House Conference on Aging Final Report for targeting issues that affect older persons who are experiencing vision loss as a result of age-related eye conditions, as well as people who have had vision problems all of their lives and who may need additional assistance as they age.

A National Conversation

To participate in the "conversation" and to ensure that older Americans with vision loss had a "voice" in the proceedings, AFB held a national conversation about the major issues on which the conference focused: healthy aging, long term services and supports, elder justice, and retirement security. AFB also invited older persons with vision loss, their family members and caregivers, and service providers to comment on these issues through an online survey.

Many major concerns were raised, some of which are addressed, in part, by the federal, state, and private sector initiatives outlined in the White House Conference on Aging Final Report. However, despite the large numbers of older persons experiencing vision loss in this country, only one mention of vision loss was made in the entire report:

Some commenters expressed concern about the lack of preventive benefits in Medicare to provide for dental, hearing, and vision care. The loss of hearing and vision can be major challenges to older adults to remain independent, and can contribute to increased social isolation.

Preventive Care and the Low Vision Devices Act of 2015

The issue raised about preventive benefits is a very important one and needs to be addressed. In fact, the Medicare Demonstration of Coverage for Low Vision Devices Act of 2015 (H.R.729) has been filed in the U.S. House of Representatives to address the need for Medicare to cover much-needed low vision devices. [Please note: As of this writing, H.R.729 has no companion bill in the Senate.]

H.R.729 "… directs the Secretary of Health and Human Services to commence a project to demonstrate and evaluate the fiscal impact of covering low vision devices under part B (Supplementary Medical Insurance) of title XVIII (Medicare) of the Social Security Act in the same or similar manner as coverage is provided for durable medical equipment under such part." [Please note: You can read about the prior Medicare Demonstration of Coverage for Low Vision Devices Act of 2013: H.R.3749 on the VisionAware blog.]

However, there were no specific responses to AFB's Letter to the President and White House Conference staff regarding our findings, a letter which over 80 agencies in the field of vision rehabilitation co-signed and which was also sent to members of Congress and key personnel in the administration.

A Quote from the White House Conference on Aging Final Report

This quote from the White House Conference on Aging Final Report sums up what ought to happen for every older American:

Moving forward, we need to appreciate our demographic changes, collaborate across sectors, focus renewed efforts on paid and unpaid caregiving and, most importantly, foster a cultural change in Americans' attitudes about aging. In doing so, we can help every individual enjoy a longer, better, more active, and more independent life. We need to effectively engage the challenges and embrace the possibilities that are inherent in a rapidly aging population and ensure that all Americans can better age well and live well. Contributing to our society and communities in a meaningful way — that will be the new definition of aging in America as we go forward.

Older persons with vision problems should not be sidelined or forgotten because of their inability to engage – due to transportation issues, lack of technology access, and/or lack of vision rehabilitation services.

As we noted in our letter:

  • The primary health programs serving older Americans, Medicare and Medicaid, do not cover technology and specialized services (e.g. low vision devices, rehabilitation therapy, etc.) for older Americans who are blind or visually impaired. A common refrain we heard is reflected in the following quotation: "Aids for vision such as glasses, magnifiers, and talking devices should be covered. This could mean the difference between a person being independent and having to have a family member, or needing to hire someone, to provide these services."
  • Service delivery systems addressing the needs of older Americans are fragmented and poorly coordinated. The federal and local agencies that support rehabilitation services for older people too often do not coordinate with agencies that provide aging services and vice versa.
  • Funding for specialized services for older adults with vision loss is insufficient. Important services do not reach many of those who have the greatest need of assistance – including those in rural areas, those who are isolated from social and family networks, and those who have additional disabilities and medical conditions (especially deafness/hearing loss, memory loss, and diabetes).
  • At a minimum, full funding is needed for the Older Individuals Who are Blind (OIB) Program, a federal program authorized by the Vocational Rehabilitation Act and administered through vocational rehabilitation services in each state.
  • The number of qualified professionals providing supports for adults with vision loss is vastly inadequate to meet the service delivery needs of the growing population of older Americans with vision loss. Targeted funds are needed to support training and employment of vision professionals, as well as to provide pre-service and in-service training for service providers, caregivers, and healthcare workers who provide in-home, community-based, and residential services.
  • Older Americans with vision loss can continue to live independent and fulfilling lives if given access to appropriate home and community-based supports for carrying out everyday tasks. Seniors should have access to qualified, trusted assistance for reviewing printed materials and managing finances in a way that respects their independence and privacy. Additionally, all Americans – particularly seniors – benefit from affordable, reliable public transportation access, not only for medical appointments and groceries, but for social activities, visiting family, and pursuing their retirement goals and aspirations.
  • Economic security is even more precarious among older Americans who are likely to have had fewer employment opportunities or to have retired early due to unexpected vision loss. These individuals significantly economically disadvantaged as a direct result of their vision loss.
  • To ensure equal access, overcome employment barriers, and promote the highest possible quality of life for Americans who are visually impaired, we must have a fundamental improvement in the public understanding and acceptance of low vision and blindness – from retail product and service providers to medical practitioners to policymakers. …Existing Older Americans Act (OAA) public education programs should include information about older persons with vision loss.

A Summary

The bottom line is that older persons with vision loss, who represent over 13% of the older population (2010 United States Census), are effectively disenfranchised. There is clearly a major need for developing a systemic approach to ensure they are included and represented in national initiatives going forward that involve strategies for addressing increasing availability of services that increase independent living options, obtaining critical technologies to enhance their health, independence, and safety, and accessing appropriate support services such as transportation.

For More Information

Information on the WHCOA initiatives was excerpted from Fact Sheet: The White House Conference on Aging.


Topics:
Planning for the Future
Assistive Technology
Low Vision
In the News
Personal Reflections
Public Policy

New Research Explained: Restoring Vision Following Long-Term Blindness: Prosthetic Vision and Considerations for Rehabilitation

the JVIB logo

During the past several years, there has been much "buzz" in the popular press about the capabilities of the so-called "bionic" eye, described variously as "miraculous," "restoring sight," and "letting me see again." At VisionAware, we have followed the development of "bionic" or "prosthetic" vision closely, avoiding hyperbole and striving to report factual, research-based information about the limitations of restored vision.

Now, in this month's edition of the Journal of Vision Impairment & Blindness, two researchers who are pioneers in the study of prosthetic vision analyze the current state of the art in vision restoration and concentrate more specifically on the type of visual gains produced by the Argus II Retinal Prosthesis.

The authors draw on their shared background in the rehabilitation of native low vision (i.e., vision loss resulting from age-related macular degeneration, diabetes, glaucoma, and retinitis pigmentosa, for example) and of restored vision, comparing and contrasting traditional rehabilitation for low vision with a new challenge: rehabilitation of restored low vision following decades of blindness.

They describe (a) a typical sequence from low vision rehabilitation to blind rehabilitation, (b) a typical sequence of rehabilitation from blindness to prosthetic low vision, (c) the challenge of sensory integration with native or prosthetic ultra-low vision, and (d) the psychology of vision restoration, while "keeping in mind that restored vision is severely limited vision, and that it is qualitatively different from native vision that is severely limited."

An Overview of Vision Restoration and Rehabilitation Strategies

The article, entitled Restoration of Vision Following Long-Term Blindness: Considerations for Providing Rehabilitation, has been published online in the January-February 2016 edition of the Journal of Visual Impairment & Blindness. The authors are Duane R. Geruschat, Ph.D. and Gislin Dagnelie, Ph.D., from the Wilmer Eye Institute, Johns Hopkins University School of Medicine, Baltimore, Maryland. Both authors are also members of the Argus II Study Group, an international consortium of eye and vision researchers.

The Journal of Visual Impairment & Blindness (JVIB) is the essential professional resource for information about visual impairment, blindness, and low vision. The international peer-reviewed journal of record in the field, JVIB delivers current research and best practice information, commentary from authoritative experts on critical topics, news from the field, and a calendar of important events. It is available in print, e-book, and online. You can learn more about the journal at About JVIB.

[Full disclosure: Although I am an Associate Editor of JVIB, I was not involved in the management, editing, or preparation of this article.]

More about the Argus II Retinal Prosthesis and Vision Restoration

the Argus 2 system

The Argus II was developed by Second Sight Medical Products, Inc., of Lausanne, Switzerland and Sylmar, California to treat adults with severe to profound retinitis pigmentosa (RP). RP is a rare, inherited degenerative disease that damages light-sensitive cells in the retina, resulting in decreased vision at night or in low light; loss of side (peripheral) vision; and loss of central vision as the disease progresses. At present, there is no cure for RP.

The retina is the light-sensitive tissue that lines the inside surface of the eye. Cells in the retinal tissue convert incoming light into electrical impulses. These electrical impulses are carried by the optic nerve to the brain, which finally interprets them as visual images. The Argus II is not a cure for RP; instead, it is intended to replace the function of the light-sensing cells that have been damaged and/or degraded by the disease.

The Argus II device consists of the following components:

  • a small video camera
  • a transmitter mounted on a pair of eyeglasses
  • a video processing unit (VPU)
  • an artificial retina (the implanted retinal prosthesis, which is an array of electrodes)

The video camera images are transformed into electronic data by the VPU that sends signals to a wireless receiver implanted in the eye (the retinal prosthesis electrodes). The electrodes allow the electronic signals to bypass the damaged retina and transmit directly to the brain, where they are interpreted as visual images.

The cost of the Argus II is approximately $100,000; additional fees include the implantation surgery and training to use the device. The Second Site website provides an illustrated system overview, including a video animation.

On February 14, 2013, Second Sight received approval as a Humanitarian Use Device (HUD) from the U.S. Food and Drug Administration (FDA) for the Argus II. The HUD designation is an approval specifically for devices intended to benefit small populations and/or rare conditions. On August 15, 2013, Second Sight announced that the Argus II was approved by the Centers for Medicare and Medicaid Services (CMS), beginning October 1, 2013. You can learn about all ongoing Argus® II clinical trials at the ClinialTrials.gov website.

Who Is Eligible for the Argus II?

The Argus II is implanted in a single eye, typically the worse-seeing eye. It is indicated for persons with severe to profound RP who meet the following criteria:

  • Age 25 or older
  • Have bare light or no light perception in both eyes: Bare light perception is the ability to perceive light, but not the direction from which the light is coming. If the person has no residual light perception, then evidence of intact inner layer retina function must be confirmed.
  • A previous history of useful form vision
  • Be aphakic or pseudophakic: Aphakic means that the eye is lacking its natural lens. Pseudophakic means that the eye has been fitted with an artificial lens implant (as in cataract surgery) to replace the missing or surgically removed natural lens.
  • If the person is phakic (i.e., has a natural lens or an artificial lens implant) prior to the Argus II implant surgery, the lens will be removed during the implant procedure.
  • Be willing and able to receive the recommended post-implant clinical follow-up, device fitting, and visual rehabilitation.

More about Vision Restoration and Vision Rehabilitation in JVIB

Excerpted from Restoration of Vision Following Long-Term Blindness:

The psychology of vision restoration

Age-related macular degeneration and retinitis pigmentosa have something in common – there is no cure. Although current therapies for age-related macular degeneration such as anti-VEGF (anti-vascular endothelial growth factor) drug therapy may result in slowing the disease's progression, they do not represent a cure.

From the day of diagnosis, patients with retinitis pigmentosa have faced the harsh reality that no treatment was available to recover lost vision or even to delay the progressive loss of vision. The unexpected introduction of vision can for some patients can be a sort of "rewinding of life" in that they once again, and unexpectedly, have some ability to detect things visually. We have observed that the emotional responses to this life event are varied.

For some, the simple phrase "I can see again" has deep meaning. For others, there can be a sense of confusion with the experience of seeing lights. Even if they do not experience any functional improvement with the reintroduction of vision, the self-image of being able to say they have sight is described as a positive and at times emotionally altering event, and is described as improving their outlook on life.

Others, those who have limited blindness skills, have made accommodations with their families to address their daily needs. They describe the enjoyment of detecting lights, detecting the flicker of a fireplace, the moon, or a television, and these experiences offer an improvement to quality of life. For yet others, there is a clearly observable and measurable effect. For example, detecting crosswalk lines to minimize the impact of veering, knowing one's precise location in a room through the ability to visually detect doorways and windows, and sorting laundry are a few examples of high-contrast activities that can benefit from limited visual input.

These "improvements" in quality of life or actual performance occur because the patient has come from functional blindness to visual input, which enhances their self-image. Such improvements do not occur in typical low vision or blindness rehabilitation, in which the reduction or total loss of sight is a relatively recent event so that, even as magnifiers improve the ability to read small print or blindness techniques improve independence, the emotional process of working through the loss of sight can often be the dominant psychological factor. Providers of rehabilitation have limited experience with the reintroduction of vision, yet it has a major impact on the rehabilitation process. [Emphasis added.]

…Keeping in mind that restored vision is severely limited vision, and that it is qualitatively different from native vision that is severely limited, these patients may have archival visual memories from when they had sight but they have no visual memory yet of what they are seeing with the visual prosthesis. Using touch to develop these new visual memories appears to be an important and integral part of the rehabilitation process.

… we have observed retinal implant patients reengaging with the struggle of having sight, but not enough sight to do things entirely visually, needing to combine remaining sight with blindness skills. The amount of sight they have regained will not allow them to return to the life of a person who is fully sighted, nor will they be visually independent. They experience this new sight as a complement or supplement to their blindness skills.

Some patients, especially those who have been blind for long periods of time and have successfully developed blindness skills, can find the reintroduction of vision to be a novel experience but with limited practical application in their daily life. In psychological terms, they enjoy the visual experience and are happy with the results, but they may not be using the vision for functional tasks even if this could bring greater visual enjoyment and quality of life benefits.

VisionAware will continue to report the results of Argus II and related vision restoration research as they become available. You can read an interview with the authors at Meet Dr. Gislin Dagnelie and Dr. Duane Geruschat: Pioneers in the Study of Restored and Prosthetic Vision on the VisionAware blog.

In addition, you can read our interviews with Argus II Study Group members Dr. Duane Geruschat and Dr. Aries Arditi on the VisionAware blog.

Additional Argus II Information at VisionAware

Argus II images provided by Second Sight Medical Products, Inc. Used with permission.


Topics:
Low Vision
Orientation and Mobility
Technology
Getting Around
Medical Updates
Clinical Trials
Diabetes and diabetic retinopathy
Macular Degeneration
Stroke or Brain Trauma
Retinitis Pigmentosa
Glaucoma

New Research: Significant Disparities Exist in Screening Rates for Diabetic Retinopathy among Minority Patients

retina with diabetic retinopathy

New diabetes research from the University of California at Los Angeles indicates that there is a pronounced disparity in diabetic retinopathy screening rates between Hispanic and African American patients.

Compared with Hispanic patients, African American patients were screened 50% less often in the previous year, despite reporting similar barriers to screening, similar awareness that diabetes may lead to diabetic retinopathy, and the same likelihood of receiving physician recommendation for diabetic retinopathy screening.

"Our findings of a large discrepancy in diabetic retinopathy screening rates among safety-net minority communities may have important implications for consequent risk of blindness," the researchers wrote. "Different approaches to encourage diabetic retinopathy screening may be necessary in different minority populations."

From Diabetes Care

The research, entitled Disparities in Diabetic Retinopathy Screening Rates within Minority Populations: Differences in Reported Screening Rates among African American and Hispanic Patients, has been published online ahead-of-print in the December 30, 2015 edition of Diabetes Care, a peer-reviewed journal published monthly by the American Diabetes Association (ADA). Diabetes Care is a journal for health care practitioners that is intended to increase knowledge, stimulate research, and promote better management of people with diabetes.

The authors are Yang Lu, Lilian Serpas, Pauline Genter, Christina Mehranbod, David Campa, and Eli Ipp, who represent the following institutions: the Los Angeles Biomedical Research Institute, St. Torrance, CA; the David Geffen School of Medicine, University of California, Los Angeles; and the Los Angeles County Department of Health Services.

About the Research

Excerpted from Screening for Diabetic Retinopathy Varies Among Minorities, via Endocrinology Advisor:

For patients with diabetes, diabetic retinopathy screening varies for different minority groups, according to research published in Diabetes Care.

Yang Lu, PhD, from Los Angeles Biomedical Research Institute in St. Torrance, California, and colleagues examined perceived barriers to diabetic retinopathy screening in vulnerable populations using survey data collected from 101 patients with diabetes, including 71 Hispanics and 27 African-Americans.

The researchers found that most patients were aware of diabetic retinopathy as a potential complication of diabetes, and more than 75% reported that a physician had recommended diabetic retinopathy screening. However, only 55% reported screening in the previous year.

African-American patients were screened 50% less often than Hispanic patients in the previous year (30.4% vs 62.7%); this was in spite of [both groups] reporting a similar number of barriers to screening (1.6 each), similar awareness that diabetes may lead to diabetic retinopathy (100% vs 90%), and similar likelihood of receiving a screening recommendation [from a physician] (78% vs 77%).

More about the Research from Diabetic Care

From the article introduction:

Diabetic retinopathy screening is essential for early detection and treatment of diabetes-related visual impairment and blindness. Yet, it is commonly underutilized among low-income minority patients. To examine perceived barriers to diabetic retinopathy screening in these vulnerable populations, we collected survey data from 101 patients with diabetes, including 71 Hispanics and 27 African Americans at a large safety-net clinic in South Los Angeles.

[Editor's note: The "health care safety net" is a term that defines the array of clinical sites that provide health care opportunities for those who otherwise would have barriers to accessing quality health services. These barriers include lack of coverage, geographic isolation, language and culture, mental illness, and homelessness.]

Patients surveyed demonstrated typical characteristics for a safety-net population. Among patients surveyed, 50% reported less than $10,000 in annual household income, 56% were unemployed, and 33% had a high school diploma/GED or above.

The survey revealed that most patients were aware of diabetic retinopathy as a potential complication of diabetes and more than 75% acknowledged that a physician had recommended diabetic retinopathy screening, yet only 55% reported screening in the previous year, similar to previously reported rates in underserved populations.

However, compared with Hispanic patients, African American patients were screened 50% less often in the previous year (30.4 vs 62.7%), despite reporting a similar total number of barriers to screening (1.6 each), similar awareness that diabetes may lead to diabetic retinopathy (100% vs 90%), and the same likelihood of receiving physician recommendation for diabetic retinopathy screening (78% vs 77%).

Patients in each population also reported similar types of barriers to diabetic retinopathy screening. The exceptions were that more Hispanic patients felt that being "upset" or "depressed" was a barrier, and more African American patients reported "fear of screening" or "not being comfortable …"

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.

What Is a Vision Screening?

A vision screening is a relatively short examination that can indicate the presence of a vision problem, such as diabetic retinopathy, or a potential vision problem. A vision screening cannot diagnose exactly what is wrong with your eyes; instead, it can indicate that you should make an appointment with an ophthalmologist or optometrist for a more comprehensive dilated eye examination.

What Is a Comprehensive Dilated Eye Examination?

A comprehensive dilated eye examination generally lasts between 30 and 60 minutes, and is performed by an ophthalmologist or optometrist. It should include the following components:

A Health and Medication History

  • Your overall health and that of your immediate family
  • The medications you are taking (both prescription and over-the-counter)
  • Questions about high blood pressure (hypertension), diabetes, smoking, and sun exposure.

A Vision History

  • How well you can see at present, including any recent changes in your vision
  • Eye diseases that you or your family members have had, including macular degeneration and glaucoma
  • Previous eye treatments, surgeries, or injuries
  • The date of your last eye examination

An Eye Health Evaluation

  • An examination of the external parts of your eyes: the whites of the eyes, the iris, pupil, eyelids, and eyelashes.
  • A dilated internal eye examination: Special eye drops will dilate, or open, your pupil, which allows the doctor to observe the inner parts of your eye, such as the retina and optic nerve. This can help to detect subtle changes of the optic nerve in persons without any visual symptoms and potentially lead to early detection of disease, including diabetic retinopathy.
  • A test of the fluid pressure within your eyes to check for the possibility of glaucoma.

A Refraction, or Visual Acuity Testing

a phoropter

A refraction helps determine the sharpness or clarity of both your near (reading) and distance vision.

This includes testing your vision with different lenses (sometimes contained in a machine called a phoropter, pictured at right) to determine if your vision can be improved or corrected with regular glasses or contact lenses.

Visual Field Testing

Visual field testing helps determine how much side (or peripheral) vision you have and how much surrounding area you can see.

Humphrey Field Analyzer

The most common type of visual field test in a comprehensive eye exam is called a confrontation field test, in which the doctor briefly flashes several fingers in each of the four quadrants (above, below, right, and left) of your visual field while seated opposite you.

In some cases, your doctor may also want to perform a more precise visual field measurement, using a computerized visual field analyzer, such as the Humphrey Field Analyzer (pictured at left).

Your Examination Results

The doctor will be able to determine if the visual problems you are experiencing are normal age-related changes or are disease-related, and if additional testing, referral to another doctor or specialist, or treatments are needed.

Locate an Eye Care Professional in Your Area

Additional Diabetes Information


Topics:
Low Vision
Health
Diabetes and diabetic retinopathy

New Research: Stepped Care for Coping with Age-Related Vision Loss, Depression, and Anxiety

the BMJ logo

New research from Europe indicates that stepped care – a type of treatment that can offer self-help and "as needed" options for coping with age-related vision loss and depression – can offer promise in dealing with depression and anxiety in visually impaired older adults.

Further, this stepped care approach (detailed below) could lead to standardized strategies for the screening, monitoring, treatment, and referral of visually impaired older adults with vision-related depression and anxiety.

From the British Medical Journal (BMJ)

The research, entitled Stepped care for depression and anxiety in visually impaired older adults: a multicenter randomised controlled trial, has been published in the November 23, 2015 edition of the British Medical Journal (BMJ), an online, open-access, peer-reviewed journal published by the British Medical Journal Group.

The authors are Hilde van der Aa; Ger van Rens; Hannie Comijs; Tom Margrain; Francisca Gallindo-Garre; Jos Twisk; and Ruth van Nispen, who represent the following institutions: VU University Medical Center, Amsterdam, Netherlands and the School of Optometry and Vision Sciences, Cardiff University, Cardiff, United Kingdom.

More about the Study

Excerpted from Stepped care may ward off depression in sight-impaired elderly, via Reuters Health:

For older people with age-related vision loss and at risk of developing depression, a type of treatment in which tailored options are only offered when necessary may help stave off both depression and anxiety, according to a recent European study.

Stepped-care delivery is aimed at long-term disease management that maximizes the effectiveness and efficiency of resources, the authors write in the BMJ. Patients start with lower intensity treatments and only progress to higher intensity interventions if they don't respond to the first efforts.

Fifteen percent of visually intact older adults have symptoms of depression and around two percent have major depressive disorder, said Dr. Robin Casten of Thomas Jefferson University and the Jefferson Hospital for Neuroscience in Philadelphia, who was not part of the new study.

The researchers studied 265 people age 50 or older in Belgium or the Netherlands who had impaired vision and also some level of depression or anxiety, but less than required for a clinical diagnosis.

Half of the group received usual care while the other half was also enrolled in a stepped-care program involving occupational therapists, social workers and psychologists from low-vision rehabilitation organizations.

The providers began by monitoring patient progress with (a) "watchful waiting" for three months, then delivering (b) guided self-help programs based on cognitive behavioral therapy for three months, (c) problem-solving treatment for the next three months, and (d) referral to a general practitioner if necessary at the end of the program. Patients only moved from one type of treatment to another if they still had elevated symptoms of depression or anxiety.

The guided self-help program involved face-to-face meetings and telephone calls designed to promote awareness of depression and anxiety, negative thought patterns, and self-defeating thoughts, as well as pleasurable activities that can still be carried out with visual impairment. Problem-solving treatment involved seven one-hour face-to-face meetings with social workers who helped patients establish realistic goals, generate alternative solutions, and select the best solution.

Two years after the study began, and one year after all four consecutive treatments would have been completed, 62 people in the comparison group, or 46 percent, developed a depressive or anxiety disorder, compared to 38 people, or 29 percent, in the stepped-care group. About a third of people dropped out of the program before the two years were up.

More about the Stepped-Care Model and Protocols for Depression

From Stepped care for depression and anxiety in visually impaired older adults: a multicenter randomised controlled trial, with the full open-source article available online:

Step 1: Watchful waiting (three months)

  • The first step was a period of watchful waiting, involving an active decision not to treat the condition but, instead, to intermittently reassess its status.
  • The executive researcher contacted the patient by telephone at baseline (for about 15 minutes) and after three months of watchful waiting. (for about 15 minutes)
  • Patients could contact the executive researcher by telephone during this period if necessary.

Step 2: Guided self-help (three months)

In the second step, guided self-help, based on a written, digital, audio, and braille version of a self-help course based on cognitive behavioural therapy (with specific vision-related examples and exercises), was offered. The course was divided into seven chapters, aimed at:

  • Increasing awareness of depression and anxiety in relation to having a chronic visual impairment, and setting a personal goal.
  • Increasing awareness of fatigue and stress in relation to depression and anxiety in people with a visual impairment, and offering relaxation exercises.
  • Increasing awareness of pleasurable activities that can still be carried out despite the visual impairment, and encouragement to take action.
  • Identifying and replacing self-defeating thoughts with healthier thoughts by means of exercises based on rational emotive behaviour therapy.
  • Identifying negative thought patterns (for example, black and white thinking, catastrophic thinking) and replace unhelpful thoughts with helpful thoughts.
  • Identifying personal communication styles (passive, assertive, or aggressive), and learning to use an assertive communication style
  • Continuing to use learned skills by reflecting on everything that has been learnt and setting goals for the future.

Guidance was provided by trained and supervised occupational therapists (n=17) from the outpatient low vision rehabilitation organisations. Two face-to-face contacts took place at the beginning of the intervention (about 60 minutes each contact) and one to three telephone calls (for about 15 minutes each). In the meantime, patients followed the intervention at home.

Step 3: Problem solving treatment (three months)

  • In the third step, trained and supervised social workers (n=7) and psychologists (n=5) from the low vision rehabilitation centres offered problem-solving treatment.
  • A maximum of seven face-to-face contacts (about 60 minutes each) took place.

During each of these contacts, the seven steps of problem-solving treatment were completed:

  • Clarify the problem.
  • Establish realistic goals.
  • Generate multiple alternative solutions by brainstorming.
  • Explore pros and cons of the alternative solutions.
  • Select the best solution.
  • Conduct a plan to carry out the best solution.
  • Evaluate the process.

Step 4: Referral to a General Practitioner (GP)

  • When increased symptoms of depression and anxiety still persisted after problem-solving treatment, the executive researcher contacted the patient by telephone to refer him or her to their GP (about 15 minutes).
  • The executive researcher called the GP, who made an appointment with the patient to discuss further treatment and the use of drug treatment (about 15 minutes).

About the Study

From the article abstract:

Study question: Is stepped care compared with usual care effective in preventing the onset of major depressive, dysthymic, and anxiety disorders in older people with visual impairment (caused mainly by age related eye disease) and subthreshold depression and/or anxiety?

Methods: 265 people aged more than or equal to 50 were randomly assigned to a stepped care programme plus usual care (n=131) or usual care only (n=134). Supervised occupational therapists, social workers, and psychologists from low vision rehabilitation organisations delivered the stepped care programme, which comprised watchful waiting, guided self-help based on cognitive behavioural therapy, problem solving treatment, and referral to a general practitioner.

The primary outcome was the 24-month cumulative incidence (seven measurements) of major depressive dysthymic and/or anxiety disorders (panic disorder, agoraphobia, social phobia, and generalised anxiety disorder). Secondary outcomes were change in symptoms of depression and anxiety, vision related quality of life, health-related quality of life, and adaptation to vision loss over time up to 24 months' follow-up.

Study answer and limitations: 62 participants (46%) in the usual care group and 38 participants (29%) from the stepped care group developed a disorder. The intervention was associated with a significantly reduced incidence, even if time to the event was taken into account. The dropout rate was fairly high (34.3%), but rates were not significantly different for the two groups, indicating that the intervention was as acceptable as usual care.

Participants who volunteered and were selected for this study might not be representative of visually impaired older adults in general (responders were significantly younger than non-responders), thereby reducing the generalisability of the outcomes.

What this study adds: Stepped care seems to be a promising way to deal with depression and anxiety in visually impaired older adults. This approach could lead to standardised strategies for the screening, monitoring, treatment, and referral of visually impaired older adults with depression and anxiety.

A Very Personal Reflection on Vision Loss, Depression, Personal Growth, and Independence

Audrey Demmitt, RN, BSN, is a nurse diabetic educator, VisionAware Peer Advisor, Support Group Advisor, and AFB Career Connect mentor. These are her reflections on grappling with – and ultimately overcoming – her vision loss-related depression:

Audrey Demmitt and her dog guide

Blindness is a thief of much more than just vision. It robs you of many things and the impact is life-changing. In the early stages of adjustment, loss is its anthem and grief is its mantle. Often, depression is a close companion of vision loss because the losses pile up and overwhelm one's ability and internal resources to handle them. This was my experience.

In the beginning, I was not even aware of all the losses that would come as a result of my vision loss, which served to protect me. There are many kinds of losses to catalog. There is the actual sensory loss of vision: losing touch with the physical world and missing out on information, colors, and beauty.

Shattered dreams are another significant loss. There are material losses caused by blindness, like the loss of a job, car, home, or relationship. And there are internal, personal losses, such as self-esteem, confidence, social standing, identity, security, and purpose in life. Indeed, blindness is a greedy thief that seeks to destroy – if you let it.

Accept, Adjust, Cope, Reaffirm

The task is to learn to accept, adjust, cope, and reaffirm life as a person who is visually impaired. The process is a long farewell to who you once were and how you used to do things. It involves re-imagining life as a visually impaired person and reinventing yourself. It is a tall order, but the point is that you can learn to adjust, limit your losses, and reclaim your life.

You never quite finish adjusting. This is also true of personal growth. We are always growing as a result of our experiences. We are always adjusting to what life brings us: new stages, crisis, joys, challenges, set-backs and losses.

Learning that Emotions Come from What We are Thinking

There was a time when I was not "adjusting" very well to my vision loss. I was angry and felt life was unfair. I was afraid of the future. And I was depressed. In short, I was "stuck" and it affected every aspect of my life. Eventually, I sought counseling and began to understand the impact and implications of my vision loss.

I learned about depression; that there was no shame in it, which freed me to address it. Through cognitive therapy, I learned that our emotions come from what we are thinking; negative thinking results in negative feelings. This seemingly simple concept was a key to turning my depression around.

You can read more about Audrey's emotional journey at From Personal Loss to Personal Growth and the Road to Independence on the VisionAware website.

Additional Information

Make a positive choice to reach out for support and services to enhance your independence and quality of life. VisionAware can help you find resources and connect to services. Consult the Directory of Services for your state. And learn about what others are doing through our blog series on the theme of personal independence.


Topics:
Planning for the Future
Low Vision
Personal Reflections
Medical Updates
Diabetes and diabetic retinopathy
Macular Degeneration
Retinitis Pigmentosa
Glaucoma
Cataracts
Caregiving
Aging

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