New Research: Patients not Referred for Low Vision Services in a Timely and Efficient Manner
by Maureen Duffy
Last month, at the 2014 American Academy of Optometry Annual Meeting, a group of student researchers from the New England College of Optometry presented survey data that identified (a) patient barriers to low vision services and (b) the actions optometrists can take to improve the efficiency of referrals to low vision specialists.
Their research revealed a discrepancy between what primary care optometrists and low vision specialists define as low vision (i.e., a functional versus numerical definition); in addition, this discrepancy creates a situation in which many patients who could benefit from low vision services are not being referred. The research group concluded that "developing a standardized definition [of low vision] would be advantageous to help normalize the referral and treatment processes."
About the Research
This important low vision research, entitled Bridging the Gap: Improving the Efficacy of Referrals from Primary Care Optometrists to Low Vision Specialists, was conducted by Anne Bertolet, Emily Humphreys, Hannah Woodward, Jessica Zebrowski, Inna Kreydin, and Jenna Adelsberger, from the class of 2017 at the New England College of Optometry (NECO).
From NECO Students Share Research at Academy 2014, via NECO News:
Their research focused on identifying patient barriers (economic status, physical distance from an office, lack of information) to low vision treatment and what optometrists can do to improve the efficacy of referrals to low vision specialists.
Anne Bertolet explains, "One of the major points our results suggest is that there is a discrepancy between what primary care optometrists and low vision specialists define as low vision. The majority of low vision optometrists use a functional definition of low vision: any visual impairment that can hinder quality of life or daily functioning."
"Interestingly, we found that primary care optometrists were a lot more varied in their definition, with less than half choosing a functional definition and the rest opting for various best-corrected visual acuity-based definitions."
"This suggests that there are some patients who could benefit from low vision services, but are not getting referred and that developing a standardized definition would be advantageous to help normalize the referral and treatment processes."
About Low Vision
If your eye doctor tells you that your vision cannot be fully corrected with ordinary prescription lenses, medical treatment, or surgery, and you still have some usable vision, you have what is called low vision. Having low vision is not the same as being blind.
Having low vision means that even with regular glasses, contact lenses, medicine, or surgery, you might find it challenging, or even difficult, to perform everyday tasks, such as reading, preparing meals, shopping, signing your name, watching television, playing card and board games, and threading a needle.
You can learn more amount low vision, including the differences between low vision and legal blindness, at Low Vision and Legal Blindness Terms and Descriptions.
What Help Is Available?
Often, a low vision specialist can give you recommendations about optical and non-optical devices and vision rehabilitation services that can help you to maximize your remaining vision and learn new ways of doing everyday tasks.
Some examples of helpful devices that a low vision specialist can discuss with you include:
- illuminated stand magnifiers or electronic aids for reading
- strong glasses or small telescopes for seeing the computer screen, reading sheet music, or sewing
- telescopic glasses for seeing television, faces, signs, or other items at a distance
- glare shields for reducing glare and enhancing contrast
- adaptive daily living equipment to make everyday tasks easier, such as clocks with larger numbers, writing guides, or black and white cutting boards to provide better contrast with food items.
In addition, low vision services can include any or all of the following:
- training to use optical and electronic devices correctly
- training to help you use your remaining vision more effectively
- improving lighting and enhancing contrast in each area of your home
- providing a link with a counselor or a support group
- learning about other helpful resources in the community and state, such as vision rehabilitation services.
More about the Research
Excerpted from Patients Missing Out on Low Vision Services, via Medscape (registration required):
Many baby boomers who could benefit from low vision therapy aren't getting it for a variety reasons, including a lack of a standard definition of low vision and lack of referral to low vision specialists, a new survey shows.
"Despite the clear advantages, there remains a discrepancy between the number of patients who would benefit from low vision services and utilization of these services," report investigators from the New England College of Optometry, Boston, Massachusetts.
"While there have been studies geared towards patient barriers (economic status, physical distance from an office, etc), there wasn't really any research focusing on what we as optometrists could do to improve the efficacy of referrals to low vision specialists," Anne Bertolet, who worked on the survey, told Medscape Medical News.
The investigators surveyed 19 primary care optometrists who were members of the Massachusetts Society of Optometrists and eight low vision specialists at optometry schools across the country. They asked about low vision definitions, available resources, and referral practices.
Fourteen of the 19 primary care optometrists said they refer patients to low vision specialists. But a major finding, Bertolet said, was the discrepancy between how low vision specialists and primary care optometrists define low vision.
"The majority of low vision optometrists use a functional definition of low vision: any visual impairment that can hinder quality of life or daily functioning," she explained. "On the other hand, primary care optometrists were a lot more varied in their definition, with less than half choosing a functional definition and the rest opting for various best-corrected visual acuity-based definitions."
Bertolet and colleagues favor defining low vision as any visual impairment that impedes functionality. "Numerical definitions do not take into account a patient's quality of life, and may make it difficult for some patients to afford the care that could improve their livelihood," Bertolet said.
"While the majority of primary care optometrists stated they are providing resources (pamphlets, magnifiers, CCTVs, etc) or educating patients about low vision services and treatment options, most low vision specialists report patients are not aware of the resources available to them at the time of their first visit," Bertolet said.
"This suggests that there is ineffective communication from primary care doctors to patients in regards to low vision care. Clear communication is especially important in low vision referrals because patients are more likely to follow through if they understand the potential benefits of low vision services," she explained.
The AFB Low Vision Pilot Project
The American Foundation for the Blind (AFB) recently launched the Low Vision Pilot Project on VisionAware, which expanded the listing of low vision service providers to include independent service providers. Previously, the Directory listed only nonprofit low vision service providers.
If you are a low vision service provider and would like to be included in the Directory, you can sign up online. To learn if you are eligible for inclusion in the AFB Directory of Services, see the eligibility requirements. To learn about low vision services that are available to you in your area, use VisionAware's Directory of Services to find help.
And kudos to NECO students Anne Bertolet, Emily Humphreys, Hannah Woodward, Jessica Zebrowski, Inna Kreydin, and Jenna Adelsberger for this important work. We appreciate your insight and efforts!
Re: New Research: Patients not Referred for Low Vision Services in a Timely and Efficient MannerPosted by MaureenD on 12/8/2014 at 1:06 PM
A response from our colleague Bryan Gerritsen, reprinted here with his permission:
Doctor Donald Fletcher has had several articles regarding a wonderful phrase that he uses frequently: "Vision is more than acuity." I have adopted that, and use it in classes I teach, in seminars, and in conversations with the doctors that I work with and who refer to us.
I use several slides to show how patients with fairly good visual acuity (e.g. 20/40) can have nasty central scotomas, including ring scotomas, and/or very poor contrast sensitivity function. The common reaction to these slides is [or should be], "No wonder this person says that they have trouble reading!" Or, "That person is driving?" Doctors Lylas Mogk and August Colenbrander also teach masterfully on this subject, regarding the role of scotomas and contrast, versus merely acuity.
When primary care optometrists or ophthalmologists mainly use a certain acuity as a basis of referring, they are missing a huge portion of the patient base that is struggling to read, see faces, and "function." Usually, the reason these patients are struggling, despite their comparatively good acuities, is because of bothersome geographic atrophy or scotomas, or because of diminished contrast sensitivity function. (With a stroke patient, who typically has acuities of 20/30 or thereabouts, it is due to homonymous hemianopsia.)
Until we get Doctor Fletcher's message across to primary care doctors, unfortunately we will struggle with under-referring of patients who could truly benefit from low vision rehabilitation services.
Re: New Research: Patients not Referred for Low Vision Services in a Timely and Efficient MannerPosted by Hokie1 on 12/8/2014 at 2:39 PM
I had a disappointing experience on this matter while helping my wife begin to cope with the effects of her vision loss due to MD. Her treating physician was very good during the treatment process but when it was time for my wife to consult with someone about her new world of "Low Vision" she was left woefully unprepared for what that really meant.
When the appointment with "Low Vision" specialists was set up, she and I both thought that meant another level of treatment for her MD ...not an offering of tools to help her cope with vision loss.
The session with the Low Vision specialists turned out to be, it seemed to us, just a sales pitch for various seeing aids including a new pair of reading glasses.
Re: New Research: Patients not Referred for Low Vision Services in a Timely and Efficient MannerPosted by MaureenD on 12/11/2014 at 11:28 AM
This is Maureen Duffy, the author of this post. I read your comment with great interest, especially because I have some knowledge of your – and your wife's -- situation, via our email correspondence. What I do know is that you are wholeheartedly devoted to your wife's care, including your desire to find a treatment or cure for your wife's macular degeneration.
Everyone should have a devoted and very knowledgeable spouse like you.
When I read your comment, I had two very distinct reactions. First, I was interested to learn that your wife's ophthalmologist had referred her (and you) to low vision services. That does not happen as frequently as it should, and it indicated to me that you are in the hands of a knowledgeable and caring practitioner. Usually, an ophthalmologist will refer a patient to low vision services when he or she determines that the current treatment (i.e., injections) will no longer produce visual gains. That is usually when low vision services are introduced into the doctor/patient conversation.
But I also sensed your unhappiness with your experience with the low vision service you encountered. I am sorry to learn that it was not successful for you. I have been a low vision service provider and have worked with many patients, some of whom were similar to your wife's situation. I have indeed talked about "tools and techniques" that will help the individual (and of course the spouse and family members) to use remaining vision as effectively as possible and remain as independent as possible.
The way I did that was by working with the low vision doctor to determine if magnifying reading glasses, for example, could produce some gains in vision. At present, in the absence of any major cure for most eye diseases, these are the primary tools that low vision specialists have.
However, as a low vision specialist in this position, I was also always acutely aware that the subtext of the message I was delivering was that surgical or medical intervention was not likely (in most cases) to restore the vision that was lost. I realize that for many patients, I delivered a message that was extremely painful. I also was aware that I represented an unacceptable situation for many patients and their families. Sometimes, people left the office or clinic, never to return. I understood that.
This is a long way of saying that I understand what you are saying, and I understand what the low practitioner likely showed you as well. I hope that in the future you will give low vision services another chance. And of course you are always welcome to write to me again. Thank you for writing this time, Hokie1.
Re: New Research: Patients not Referred for Low Vision Services in a Timely and Efficient MannerPosted by Hokie1 on 12/11/2014 at 8:46 PM
Hello Maureen. Thanks for your kind reply.
Hokie1 is in fact Tony Frye who lives near Galveston, as you know.
We do have excellent care. My frustration was the lack of mental preparation of the patient (my wife Frances ) for the end game ... ...that she probably will be blind. Or near to it.
I will never forget the look on her face when the "Low Vision" folks told her out of the clear blue sky that she would never be able to read normally again.
I don't find fault with any of the parties. It just seemed to me SOME mental preparation would have been helpful to us both to smooth out the transition.
Thanks for your interest and for others who allow me to vent, hopefully in a positive way.
I appreciate this forum.
Re: New Research: Patients not Referred for Low Vision Services in a Timely and Efficient MannerPosted by MaureenD on 12/15/2014 at 11:01 AM
Thank you for writing and clarifying your key issues. I appreciate our dialogue as well – it helps me, too.
What you have mentioned is a situation that our own Dr. Lylas G. Mogk has addressed repeatedly in her professional life and practice. I wrote about the work of Dr. Lylas Mogk and her daughter Dr. Marja Mogk in Meet the Authors of Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight. Here's a key passage I think you'll identify with:
Why Doctors Can Be Abrupt
"In most medical programs, doctors are trained under very stressful work conditions with long hours and little consideration for their own physical, emotional, or personal lives. They must learn to ignore these things for themselves, focus on problem solving, and move quickly.
Their achievements are measured by how well they fix the physical problem they were trained to fix, not by how well they related to their patients or by how well they understood the implications of the problem for their patients' lives.
When doctors are faced with a problem that they cannot really fix, like macular degeneration, they are faced with their own limitations. And they don't always know how to handle it sensitively.
As a matter of fact, doctors are by far my worst patients at our low vision rehabilitation program. Although this information may not be particularly comforting, you can rest assured that the more abrupt doctors are, the less likely they are to handle vision loss well if it happens to them. Doctors' take-charge attitude often runs them right into the ground when they get macular degeneration.
They have feared vision loss and fought it all their lives by seeking to control it. As you know better than anyone, if there's one thing that macular degeneration takes away from us, it's the ability to conquer by controlling.
The people who handle AMD successfully are not the hard-charging executives or the General Patton types. They're the folks with a sense of humor, an abiding faith, and an ability to see the humanity in themselves and others regardless of their vision. They're the folks with a willingness to be flexible, to find other ways to direct their lives rather than by demanding precision and efficiency from everyone and everything around them."
Re: New Research: Patients not Referred for Low Vision Services in a Timely and Efficient MannerPosted by MarjorieWilliamsMindsEye on 12/28/2014 at 10:49 AM
Unfortunately, as a provider of a free, nonprofit service for people who have low vision or are blind, this is not surprising research. I run an audio information service and one of the hardest things for us it to introduce our service which reads newspapers over the radio, online and now through the iBlink app and on the Victor Reader Stream to people who are in the early stages of vison loss. Our ideal is to be able to present this service to people before they've gotten used to life without the daily paper, the grocery ads, or their favorite magazine. There are audio information services all over the country and the world. You can find one near you at www.iaais.org and most are listed in AFB's directory. Nearly all are 100% free.
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