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Disarming Glaucoma, the Sneak Thief of Sight: Wills Eye Hospital’s Glaucoma Detection and Treatment Program

Only Comprehensive Eye Exams Can Detect Disease

According to the Glaucoma Research Foundation, glaucoma is a leading cause of blindness in the United States, but only 50 percent of those affected are aware they have the disease. Often referred to as the "sneak thief of sight," glaucoma is normally painless, and vision loss may progress so slowly as to be undetectable. The disease affects peripheral, or side vision, first. Therefore, patients may unconsciously turn their heads to compensate for a field deficit that is not yet obvious to them. Although there is no cure for glaucoma, early detection is the best defense against vision loss because medications or surgery can slow its progression. Unfortunately, many Americans do not schedule routine eye exams that screen for eye diseases. We speak of visiting the "eye doctor" when we have trouble reading or watching a movie and need corrective lenses, but, in fact, the opticians who fit us for glasses do not have the medical credentials of an optometrist or ophthalmologist who can assess the health of our eyes with a comprehensive exam.

The CDC’s Vision Health Initiative Glaucoma Detection Program

The fact that Americans are losing vision to preventable eye diseases is recognized by the Centers for Disease Control and Prevention (CDC) as a public health dilemma. In 2012, The CDC launched the Vision Health Initiative (VHI) Glaucoma Detection Program to identify glaucoma symptoms among high-risk populations including those with diabetes or extreme near-sightedness, people over 60 years of age, those with a family history of glaucoma, and certain ethnic groups. Hispanics, Afro-Caribbeans, and, particularly, African Americans have a genetic predisposition to the condition. In fact, African Americans are six to eight times more likely to be blinded by glaucoma than Caucasians and are much more likely contract the disease at a younger age.

Through the VHI Glaucoma Detection Program, federally-funded grant programs are empowering local hospitals and universities to find innovative ways to educate the public about the need for routine eye exams and bring state-of-the-art diagnostic tools and medical treatments to underserved populations in urban areas. Among VHI’s original partners is the Wills Eye Hospital in Philadelphia, Pennsylvania, which is now in its third year of a five-year program entitled the "Innovative Community Outreach Program."

A doctor sitting at the reading center examining images of a patient's eye

Wills Eye Hospital’s Glaucoma Detection and Treatment Program

L. Jay Katz, MD, Chief of the Wills Eye Glaucoma Service and a Professor of Ophthalmology at Sidney Kimmel Medical College is the Principal Investigator for the Philadelphia Glaucoma Detection and Treatment Project. In Phase I, the program successfully connected hundreds of people in disadvantaged neighborhoods to glaucoma screening and medical treatments through focused outreach efforts. Non-physician educators participated in local health fairs and gave lectures at senior residential communities, senior centers, and churches. The program succeeded in raising awareness and correcting misconceptions. "We discovered that many people did not know about glaucoma and some thought it could be 'cured' with eyeglasses," Dr. Katz said.

Mobile Units Deliver Screenings and Treatments

Following the information sessions, participants were encouraged to return to the same venue at a later date for an eye exam on board a mobile unit—vans outfitted with all the diagnostic tools found in an ophthalmologist’s office. Once program participants understood risk factors and the imperative of routine eye exams, they spread the word. "Many people showed up to our mobile units with a friend or family member in tow," Dr. Katz said.

Wills Eye Hospital mobile detection van carrying equipment to the site

The search for individuals with glaucoma symptoms bore fruit. Approximately 40 percent of those tested were given a glaucoma-related diagnosis, and many opted to return to the mobile units for treatment with laser surgery.

Linking Primary Care Patients to Ophthalmologists Through Telemedicine

With Phase I now complete, Phase II of the Wills Eye Hospital glaucoma project integrates promising telemedicine technology. Instead of reaching potential patients through mobile clinics, the program enlists primary care doctors to work on the frontline of glaucoma detection. These physicians routinely see patients with conditions like diabetes and hypertension, which are risk factors for eye diseases. Yet primary care doctors do not have the capacity to provide comprehensive eye exams and far too many patients do not follow-up when they are referred to an ophthalmologist.

The Wills Eye Hospital facilitated access to eye care by establishing a program in primary care physicians’ offices to screen for undiagnosed glaucoma, glaucoma suspect, and retinal diseases using a special camera that photographs the optic nerve, retina, and macula. Technicians were also trained to use a tonometer, a hand-held instrument that can quickly and painlessly test for intraocular pressure. The images and data were then sent via a closed Internet system to glaucoma specialists and trained retinal readers who would determine the need for follow-up appointments. In many cases, glaucoma, glaucoma suspects, diabetic retinopathy, and other eye conditions were identified.

A camera being used on a patient to detect problems with the patient's eye

"We were also suspecting cataracts by noting the blurry quality of the eye images in certain patients. After that first visit, if an eye disease was identified or suspected, then a second visit was scheduled with an ophthalmologist and team that came in a mobile unit to the primary care doctor’s office to confirm the diagnosis," Dr. Katz said.

Patient Navigators Ensure Follow-Up

As with all initial diagnoses, follow-up is critical; yet, too many patients fail to pursue further care. Dr. Katz explained, "Some people might already be overwhelmed by serious health problems like diabetes or may have mild memory issues. Others simply give up trying to navigate the complexities of our healthcare system."

One research component of the Wills Eye Hospital program has been to find ways to remove barriers to medical care. One proven strategy is to assign patients a navigator who schedules necessary doctor appointments and facilitates transportation and other logistics to ensure that appointments are kept. Not surprisingly, initial findings suggest that patients assigned to a navigator are more likely to receive treatment for their eye condition than those who go it alone.

The Future of Eye Care Delivery Systems

The devastation visual impairment causes to individuals and their families is obvious, but Dr. Katz points out that blindness has an enormous impact on society. According to Katz, loss of jobs and independence for citizens who are blind cost an estimated three billion dollars a year in government services and state-sponsored aid. "Of course, preventing blindness is ethically the right thing to do, but we can also argue that investing in early diagnosis and treatments will save our communities money in the long run."

The Wills Eye Hospital Glaucoma Detection and Treatment Project has made significant inroads in promoting the eye health of Philadelphia’s residents. Dr. Katz and his team hope that the ripple effect will extend far beyond their city.

"Our overarching goal is to change the delivery system of eye care nationwide with an effective proactive screening program to identify those at risk for treatable eye diseases and prevent blindness," Dr. Katz said.

Additional Information on Glaucoma

Glaucoma: An Overview

Facts About Glaucoma

Risk Factors for Glaucoma

How Can I Detect Glaucoma If There Are No Initial Symptoms?

Patient's Guide to Living with Glaucoma


Topics:
Glaucoma
Health
Low Vision
Planning for the Future

Celebrate National Library Week with a Vision Rehabilitation Therapist

Get Ready to Read This Month at Your Local Library

The week of April 8 through 14, 2018, is both National Library Week and Vision Rehabilitation Therapist Awareness Week. This is the perfect time to team up with the local library and a Vision Rehabilitation Therapist (VRT) to learn more about reading with vision loss. For some, particularly those with recent vision loss, the idea of reading and returning to the library may seem like a lost pleasure or an unattainable goal. The most common goal I hear from clients is getting back to reading local newspapers, prescription bottles, magazines, menus, mail, etc.

How Can You Read with Vision Loss?

A Vision Rehabilitation Therapist (VRT) is a highly skilled professional whose job is to maximize whatever functional vision you have and provide training on adapted skills of daily living, including reading. For example, if your vision loss prevents you from reading a printed newspaper, large print books, or reading the computer screen the way you once did, a VRT can perform an assessment of your functional vision. They can also develop a plan with you for exploring adaptations or alternatives for reading that you may not be aware of or be knowledgeable about.

For example, it is not uncommon for a newly referred client to have several magnifying glasses that were handed down from family members or were purchased at a local pharmacy or box store. Many over-the-counter magnifiers are inexpensive, have poor optical quality, rarely exceed 3 times magnification, and have an ineffective light, if they even have a light. Clients are often pleasantly surprised after participating in an assessment with a VRT and learning to use a magnifier of the correct magnification and lighting for their vision—often not something available at the local store.

Unless you have a family member or friend with vision loss, you may have no idea of the wide variety of technology available for reading with low vision or no vision whatsoever. Some of this technology can be found on the computer, smartphones, and tablets already in our homes or at no cost at the local library.

This Year’s Theme: "Libraries Lead"

Photograph of a talking book player.

This year’s theme for National Library Week is "Libraries Lead." This is a very appropriate theme for reaching out to patrons in the community who may not realize what a vital role the local public library can play in reconnecting readers to alternate reading formats, like Talking Books, enlarged print on electronic screens, or screen readers that convert electronic text into speech.

Visiting Your Local Library

Make a date with your local library during National Library Week to see what they have to offer patrons with low vision and blindness. If you don’t know about the National Library Service (NLS) Talking Book Program, ask the librarian to fill you in or call toll free 1-800-424-8567. If you are unable to read print, you may qualify for a Digital Talking Book player at no cost, and audiobooks and magazines delivered to your home by mail. The Talking Book player is easy to learn how to use, and if you need some training, a VRT can help.

This is a screenshot of a Kindle book on a Kindle Fire HD tablet with white text on black background.

Many libraries are now loaning books on tablets, iPads, Kindles, and other electronic gadgets. The advantage of using these devices for reading with low vision is that they often allow the text to be increased larger than what is often considered "large print." In many cases, even more importantly, the contrast can be changed so that the text can be light on a dark background on the screen and the screen lighting adjusted for optimal viewing. The local librarian may not be aware of the "accessibility settings" on some of these devices, but if you bring along a VRT, he or she may be able to teach you and the librarian how to magnify the text on the screen using the software magnifier built into the device or turn the screen reader on so that the computer or tablet reads the text out loud.

You may also be pleasantly surprised to learn that the library has an electronic magnifier called a CCTV or video magnifier. These devices come in a variety of sizes, from portable hand-held units to desktop units (like the one in the York, Maine Public Library shown below). Printed material placed beneath the camera on the device can be enlarged many times, and there are settings to enable the text to be enhanced with contrast, lighting, or to change the text and background colors. Additionally, many of the newer models also have a built-in screen reader so that they can take a picture of the reading material, process the picture in a second or two, and begin reading the text to you. Here’s a tip! Because these devices are not used by the vast majority of patrons in some libraries, these may be tucked away—ask the librarian if they have one and be prepared to describe what it is.

video magnifier in York Maine Library

Time to Celebrate

So with this information, I encourage you to mark your calendars and celebrate reading during National Library Week and locate a VRT in your state during Vision Rehabilitation Therapist Awareness Week in the VisionAware Directory of Services.


Topics:
Arts and Leisure
Assistive Technology
Helpful Products
Home modification
Low Vision
Online Tools
Reading
Technology

My Impressions of the Orbit Reader 20

older woman wearing glasses and necklace, seated looking down

Editor's note: Recently, Steve Kelley wrote The Holy Grail of Braille and discussed exciting new refreshable braille technology including the Orbit Reader 20. Peer Advisor Sandra Burgess has been part of the testing program of that device and tells us about her experience in this informative post.

Efforts to Make Braille More Affordable

Braille is such an incredible tool for the blind and for some with low vision. However, braille on paper is costly because it takes up more space than the printed word. For example, one month of "The Reader’s Digest" is comprised of four volumes. Braille displayed on an electronic display with dots that pop up and down to form characters is a less costly alternative. For the past 50 years, the downside to braille displays has been the extremely high cost—too expensive for many braille readers to afford. However, with the development of a new braille device, the cost of a display has gone down significantly.

In 2012, the Perkins School for the Blind joined with 12 other organizations throughout the world to form the Transforming Braille Group (TBG) whose aim was to discover a way to make braille more affordable. The end result is a new refreshable braille display, manufactured by Orbit Research, that costs around 70 percent less than other similar devices (Refreshable braille is a digital file on a computer or other electronic device that is read with a braille display. Refreshable braille remains crisp and legible to the touch.) The American Printing House for the Blind will sell it for $449.00.

Launching the Orbit Reader 20 Pilot Program

Orbit Reader 20

The Perkins Library, which is a member of the National Library Service under the Library of Congress obtained funds to purchase 200 Orbit Reader 20s and distribute them to patrons eager to participate in a yearlong pilot study. During the pilot, participants will be asked to give feedback regarding their experiences with this product. The hope is that Perkins and other National Library Service facilities will send these e-readers to patrons who can borrow library material on SD (secure digital) cards which are inserted into a slot on the back of the Orbit. I am one of the Massachusetts Perkins Library patrons who is currently testing the Orbit Reader 20.

Features Included

  • 20-cell refreshable braille display
  • Works as a stand-alone unit, connected to a computer via a USB port, or with Bluetooth
  • Compatible with screen readers
  • Write braille using input keys
  • Two rocker switches to scroll forward or backward by lines
  • Basic file management and note taking
  • Rechargeable battery the user can replace
  • Used with an iPhone or similar device, allows the user to access apps such as Facebook, Messenger, Kindle, iBooks, or Adobe Digital Editions books
  • Compatible with iOS and Android platforms
  • Four arrow keys and a select button
  • Sharp, firm dots that defy being pushed down when touched; the dot quality comparable to that on braille signage
  • Weight: approximately two pounds
  • Measures: 6.6 inches wide, 4.4 inches thick, and 1.4 inches tall

My Personal Impressions

I really like the compact design of this unit because it is smaller and weighs less than the two previous braille displays I own. This one easily fits in a side pocket of my backpack. By comparison, this gadget pairs well with my iPhone. Last April, I became an iPhone user and was given commands to use with my older braille display to enable Bluetooth ability. It didn’t work for me much of the time. Now, with Orbit Reader 20, I have a wireless connection to my phone that enables me to read or write anywhere and to skim through e-mail and social media while I’m in front of the television. If I am dependent on my screen reader, I cannot hear well enough to multi-task. It’s been fun reading my first Kindle book.

On a somewhat negative note, I miss cursor routing keys that allow one to put your cursor anywhere in a document. Yes, I understand these were left out to lower the cost and because readers do not find them necessary, and I understand eventually, the machine may come out in another model with such frills. In addition, the dots refresh a bit slower than the dots on my displays that are sold for thousands of dollars. When the dots refresh, there is a little bit of whirring sound that I am not terribly bothered by but know some find annoying. While the dots are sturdier than on my expensive equipment, one of my dots refuses to go down at times, making reading somewhat confusing.

For the most part, I am happy with this product and look forward to seeing what changes as a result of the feedback gathered from the pilot program. I know there are bugs to work out, and I am truly grateful for all the technological advances I have seen throughout the years.

Additional Information and Resources

Orbit Reader 20 Review from AccessWorld - October 2016

APH - Orbit Reader 20 Details

APH - Orbit Reader 20


Topics:
Assistive Technology
In the News
Low Vision
Online Tools
Personal Reflections
Planning for the Future
Reading
Technology

Low-Cost Refreshable Braille at CSUN

CSUN, the annual Assistive Technology Conference, took place this month in sunny San Diego, and again, I participated "virtually," listening to podcasts and reading tweets of the products featured in between shoveling out from a series of late winter storms in southern Maine! For readers unfamiliar, CSUN is often a conference where new products, updates, and ideas are first launched in the world of Assistive Technology (AT).

Orbit Reader 20

The continued enthusiasm for refreshable braille displays—both low-cost and tablet sized—got my attention. These are not new this year. CSUN attendees will be tantalized by the Orbit Reader 20’s promise of a 20 cell braille display for under $500 and frustrated by the fitful start and stop of production to iron out the kinks. If that is not tempting enough in itself, the Canute by Bristol Braille Technology, a nonprofit based in the U.K., is a nine line, 360 cell braille display, marketed as an e-reader, much like a Kindle.

Refreshable Braille Displays Not a New Concept

Refreshable braille displays are certainly not new, the first, called BRAILLEX, was developed over 40 years ago, and the technology has changed little since that time. Small pins are pushed up and down mechanically to create the dots in a braille cell. Devices that have braille displays often have as few as 12 to 20 cells on the display. Larger displays of 80 cells are available, but for many, they are cost prohibitive. Typically, a braille cell of six or eight dots depicts one to two characters in a word. As a result, the reader reads several words on the display and refreshes the display to read the next set of words. Historically, both the technology and relatively small market have contributed to the high cost of refreshable braille displays.

The Canute

The Canute has been in development since 2012, and this is not its first demonstration at CSUN. The difference this year is that this is the 13th prototype and the one that will shortly begin pilot testing with a group of users prior to an anticipated release later this year. A press release issued in January 2018 suggested the retail price may be around $700!

Canute by Bristol Braille

In brief, the Canute will render braille files (BRF) stored on an SD card in much the same way a sighted reader would open a digital book on a Kindle. Because the Canute will have nine lines of braille with 40 cells in each line, reading on the Canute will be much more like reading from a full page of braille.

The Orbit Reader 20

By contrast, the Orbit Reader 20 has a smaller single line of 20 cell braille and offers some limited editing of braille files. Like the Canute, its primary function is to provide a low-cost, portable electronic braille reader.

Increasing Access to Braille Around the World

What is most compelling about these braille displays and the other ongoing braille projects whose goal is low-cost electronic braille is how likely these devices will increase access to braille around the world. At its most basic level, braille can be created on any heavier stock paper using a slate and stylus that costs less than $15. It is the considerable cost of embossing multi-page documents on electronic braille embossers that cost thousands of dollars or the higher cost of recreating textbooks for students in braille on paper that has dramatically undermined braille in the digital age.

For many educators and agencies who work with individual with vision loss, the alternative to teaching and reading braille has been audiobooks and text-to-speech on phones, tablets, and computers. While these alternatives are wonderful tools for accessing print, research suggests that interacting with words, grammar, and spelling with braille and print result in a higher level of literacy than that attained solely through audio tools.

Ultimately, these braille displays may reduce the reliance on a braille embosser to produce paper braille and some braille textbooks. It is worth noting that, unlike the Orbit Reader, the Canute currently utilizes a six-dot braille cell which works well for literary braille but will prevent it from being a useful tool for the eight-dot braille (Nemeth code) commonly used in science, mathematics, or computing notation. Additionally, both products have placed a priority on off-the-shelf parts to keep costs low and, presumably, make repairs cheaper and easier.

Moving Braille Literacy Forward

It is products like the Canute and Orbit Reader 20 that are heralding in a new, market niche for reduced cost braille displays and a consensus among the low vision and blind community that this is a priority for moving braille literacy and braille technology forward.

With products like the Orbit Reader and the Canute working their way to the market, both educators and rehab professionals will have access to a greater variety of braille alternatives for readers who are blind or low vision. In a recent interview with ACB Radio Tek Tak Talk, Bill Boules, Blind Rehab Specialist, pointed out that many school-age students with low vision miss the opportunity to learn braille, which may be a more efficient way for them to read because of funding restraints, limited access to braille materials, or a lack of qualified teachers of students with visual impairments. The availability of textbooks and easy access to digital braille from a low-cost refreshable braille device may encourage the use of braille for those students who are able to see print but unable to use it as efficiently as they might use braille to read.

Low-cost braille is here, and the newer technology has a few bugs to sort out, but it is here to stay and will dramatically increase reader’s access to braille. Imagine for a moment, what might happen if the braille e-readers become as popular and available among braille readers as the Kindle?

Coming next, a glimpse of the Orbit Reader 20 by Sandra Burgess, who has taken part in the testing of the device.


Topics:
Assistive Technology
Helpful Products
In the News
Reading
Technology
Web Accessibility

American Foundation for the Blind Ramps Up Aging and Vision Loss Initiative

Older woman smiling

With the introduction of AFB's new strategic direction last year, AFB has identified three significant issues to address in our efforts to create a world of no limits: education, employment, and aging and vision loss. Many of our initiatives moving forward will center around these priorities.

With regard to aging and vision loss, America is woefully unprepared to respond effectively to the aging of the population, especially as the Baby Boomer generation ages out. Further, according to the National Health Interview Survey, in 2016, of all the civilian, non-institutionalized adults ages 65 and up in the U.S, 7.3 million (or 15.1 percent) experienced vision loss, and 356,000 (or 0.7 percent) were blind. For the population ages 85 and up, 22 percent had vision loss and 1.7 percent were blind. Although we need better data, we can certainly tell from the stories and experiences of seniors that older adults with vision loss are frequently overlooked and underserved, and the numbers are continuing to increase. To make matters worse, we are already behind the eight ball in meeting the need for specialized services for older persons with vision loss. It's estimated that only 2 percent of older people who need specialized training in independent living are currently receiving it!

The 2lst Century National Agenda on Aging and Vision Loss

One of the major initiatives that AFB is facilitating related to aging is the 21st Century National Agenda on Aging and Vision Loss. It came out of a national conversation held at AFB's 2015 Leadership Conference in Phoenix, where AFB staff engaged older consumers and professionals in a meaningful dialogue about critical issues including elder justice, long-term services and support, healthy aging, and retirement security. Additionally, AFB hosted a national survey to encourage more input from consumers.

The current agenda has four goals:

  • Goal One: Funding for Services
  • Goal Two: Ensuring Availability and Quality of Professional Services
  • Goal Three: Collaboration Across Service Delivery Systems
  • Goal Four: Funding for Low Vision Devices

Critical Next Steps: Opportunities to Engage Right Now

  • Join a goal group and/or our Google Group listserv. To join, visit our Google Groups page and select "contact the owner," or e-mail Sarah Malaier.

  • AFB will be continuing the conversation on critical concerns related to aging and vision loss at the 2018 Leadership Conference in Oakland,CA, April 5-7. The conference features an aging track that begins with an update on where we are with accomplishing the above-mentioned goals. It ends with the "Second National Conversation on Aging and Vision Loss," to be held on Saturday, April 7, from 2:15 p.m. to 4:15 p.m. We are encouraging older individuals with vision loss to participate in this conversation, and there is no charge. Join us at the Oakland Marriott City Center.

  • If you are unable to attend this session and would like to engage in the conversation, please fill in our National Survey on Aging and Vision Loss at Aging Survey.

  • The Senior Center Without Walls will also be offering a national opportunity to weigh in at a teleconference on May 4 from 4 p.m. to 5 p.m. EST. To join this conversation by computer, go to https://esc.zoom.us/j/7887887778. To join by phone, call (888) 974-9888 (US toll-free) and enter meeting ID # 788-788-7778. After the prompt, enter #.

In closing, it is fitting to take a quote from our letter to the President of the United States following our first national conversation on aging: "All aging issues involve people with vision loss; likewise, all issues for people with vision loss have impacts on people who are aging. Even with the latest advances in care, anyone who wishes to live a long life has a good chance of encountering some symptoms of vision loss; most people can name older friends, colleagues, spouses, parents, or grandparents experiencing age-related vision difficulties. With the generation of aging boomers, our nation cannot afford to ignore any segment of the senior population, and AFB looks forward to supporting the research, systems, services, and policies which continue to offer equal opportunities and no limits for every American."


Topic:
Aging

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