New Research Exploring Public Attitudes About Eye and Vision Health: Losing Vision Is Equal to Losing Hearing, Memory, Speech, or a Limb
by Maureen Duffy
New survey research from Johns Hopkins University and the University of Chicago that explores Americans' attitudes toward (a) the importance of eye health, (b) concerns about losing vision, (c) support for eye health research, and (d) awareness of eye diseases and risk factors has also revealed that the loss of eyesight is considered by many survey respondents to be "the worst ailment that could happen … relative to losing memory, speech, hearing, or a limb."
According to the authors, "These findings emphasize the importance of focusing on the preservation of eye health and public support for vision research across all ethnic and racial groups in the United States.
This important new research, entitled Public Attitudes about Eye and Vision Health, has been published "online first" as an open source, freely available article in the August 4, 2016 edition of JAMA Ophthalmology. JAMA Ophthalmology is an international peer-reviewed journal published monthly by the American Medical Association.
The authors are Adrienne W. Scott, MD; Neil M. Bressler, MD; Suzanne Ffolkes, BA, MA; John S. Wittenborn, BS; and James Jorkasky, MBA, who represent the following institutions: Johns Hopkins University School of Medicine, Baltimore, Maryland; Research!America, Alexandria, Virginia; the University of Chicago, Chicago, Illinois; and the Alliance for Eye and Vision Research, Washington, DC.
More about the Research from JAMA Ophthalmology
First, here is a helpful summary from the article abstract:
Importance: Understanding the importance of eye health to the US population across ethnic and racial groups helps guide strategies to preserve vision in Americans and inform policy makers regarding the priority of eye research to Americans.
Objective: To understand the importance and awareness of eye health in the US population across ethnic and racial groups.
Design, Setting, and Participants: An online nationwide [survey] created by experienced policy makers in August 2014 designed to understand the importance of eye health in the US population, although the poll was not subjected previously to formal construct-validity testing. The population survey comprised 2,044 US adults, including non-Hispanic white individuals and minority groups.
[Editor's note: "Construct validity" is a measurement used by researchers to determine whether the research design – in this case, the survey – is able to measure what the research says it is trying to measure; in this case, it is the importance and awareness of eye health to the United States population. The authors acknowledge that this is a limitation of the study, which must be considered when analyzing the survey results.]
Results: Of the 2,044 survey respondents, the mean age was 46.2 years, 48% were male, and 11% were uninsured. 63% reported wearing glasses. Most individuals surveyed (87.5%) believed that good vision is vital to overall health, while 47.4% rated losing vision as the worst possible health outcome.
Respondents ranked losing vision as equal to, or worse than, losing hearing, memory, speech, or a limb. When asked about various possible consequences of vision loss, quality of life ranked as the top concern, followed by loss of independence.
Nearly two-thirds of respondents were aware of cataracts (65.8%) or glaucoma (63.4%); only half were aware of macular degeneration; 37.3% were aware of diabetic retinopathy; and 25% were not aware of any eye conditions. Approximately 75.8% and 58.3%, respectively, identified sunlight and family heritage as risk factors for losing vision; only half were aware of smoking risks on vision loss.
Conclusions: Vision health was a priority, with high support for ongoing research for vision and eye health. Many Americans were unaware of important eye diseases and their behavioral or familial risk factors. The consistency of these findings among the varying ethnic/racial groups underscores the importance of educating the public on eye health and mobilizing public support for vision research.
More Information from the JAMA Ophthalmology Research
Next, here is more survey information from the researchers, excerpted from the article's Introduction and Discussion:
The negative impact of vision loss on quality of life has been well documented in the literature. This negative effect of vision loss on quality of life has been demonstrated in association with cataract, diabetic eye disease, and age-related macular degeneration. Consistently, a year of life with severe vision loss has been valued at a 50% to 70% [decrease] compared with a year of life in perfect health.
However, previous studies of patient attitudes and values around vision loss have not drawn from a cross-sectional, multi-ethnic sample of Americans. Additionally, while the previous literature may inform policy makers regarding resource allocation for sight-saving interventions, the literature is largely silent on the attitudes of Americans regarding resource allocation for research into the prevention of vision loss.
[Editor's note: A cross-sectional study analyzes a group of subjects at one specific point in time. A prospective study, on the other hand, measures a group of individuals over time and follows up with the study subjects in the future. This study measured the attitudes of the survey respondents at one specific point in time.]
While publications document that US ethnic minorities are affected disproportionately by chronic eye conditions, such as glaucoma, and have a greater chance of vision impairment or blindness from these, little information exists regarding attitudes and awareness of these groups toward eye diseases.
Furthermore, whereas vision loss from chronic age-related eye diseases is predicted to have a large impact on the US economy as life expectancy of Americans increases, federal funding for eye research is less than 0.5% of the $139 billion annual cost of vision disorders.
Across all ethnic and racial demographics, nearly 88% of Americans surveyed viewed eye health as critical to overall health. … 47% viewed vision loss as the worst possible health condition that might befall them. This was true of 57% of African American individuals, a group known to have a several-fold increased prevalence of severe vision loss and potentially a greater personal experience with its effects than Americans of other ethnicities. These findings underscore the importance of good eyesight to most and that having good vision is key to one’s overall sense of well-being, irrespective of ethnic or racial demographic.
Persons with greater visual impairments have been shown to have a decreased quality of life, linked to a perception of having less control over their environment, supporting our findings that respondents across all ethnic and racial backgrounds listed blindness high among most-feared ailments.
Similarly, this study showed that Hispanic adults are the ethnic group least likely to have heard of common eye conditions such as age-related macular degeneration or diabetic eye disease. This finding is particularly concerning in that older Latino adults with diabetes or self-reported eye disease had a higher incidence of vision loss when followed over a 4-year period.
What Can You Do in Your Everyday Life for the Prevention and Treatment of Eye Disorders?
1. Know the Differences Among Eye Care Professionals
- An ophthalmologist is a medical or osteopathic physician who specializes in the medical and surgical care of the eyes and the prevention of eye disease. An ophthalmologist treats eye diseases, prescribes medications, and performs all types of surgery to improve, or prevent the worsening of, eye and vision-related conditions. An ophthalmologist will have the initials M.D. (Doctor of Medicine) or D.O. (Doctor of Osteopathy) after his or her name.
- An optometrist is a health care professional who specializes in function and disorders of the eye, detection of eye disease, and some types of eye disease management. An optometrist is trained to examine the eyes for visual defects, diagnose problems or impairments, prescribe corrective glasses and contact lenses, and, in some states, perform certain surgical procedures. An optometrist will have the initials O.D. (Doctor of Optometry) after his or her name.
- You can learn more at The Different Types of Eye Care Professionals on VisionAware.
2. Know the Difference between a Vision Screening and a Comprehensive Eye Examination
- A vision screening is a relatively short examination that can indicate the presence of a vision problem 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.
- A comprehensive dilated eye examination generally lasts between 30 and 60 minutes and is performed by an ophthalmologist or optometrist. It should always include the following components: (a) a health and medication history, (b) a vision history, (c) an eye health evaluation, (d) a refraction, or visual acuity testing, (e) visual field testing, and (f) a clear report and summary of your examination results.
- You can learn more at The Difference between a Vision Screening and a Comprehensive Eye Examination on VisionAware.
3. Know the Risk Factors for Eye Disease
- What are the Risk Factors for Age-Related Macular Degeneration?
- What Causes Cataracts?
- What are the Risk Factors for Glaucoma?
- What Is Diabetes? and Diabetic Eye Disease: Causes and Symptoms
- You can learn more about a wide range of eye diseases, disorders, and risk factors at Your Eye Condition on VisionAware.
4. Know How to Locate an Eye Care Professional in Your Area
- To learn about eye care and low vision services that are available to you in your area, use VisionAware's Directory of Services to find help.
- Visit the American Academy of Ophthalmology website and use their Find an Eye MD online database to locate an ophthalmologist in your area.
- Visit the American Optometric Association website and use their Doctor Locator online database to locate an optometrist in your area.
- New Macular Degeneration Research from the Los Angeles Latino Eye Study: Vision changes resulting from AMD are associated with a lower self-reported vision-specific health-related quality of life.
- New Research: African-Americans with Diabetes Experience the Highest Rates of Vision Loss
- Learn about ongoing glaucoma, macular degeneration, diabetic eye disease, and cataract research on the VisionAware blog.
- The VisionConnect™ app provides a searchable directory of services available in the United States and Canada for children and adults who are blind or visually impaired.
- Use the The American Foundation for the Blind/VisionAware Directory of Services to locate professionals and services in your area.
- The VisionAware Getting Started Kit for People New to Vision Loss can connect you and your family members with specialized services and products available to assist with everyday life with vision loss.
Re: New Research Exploring Public Attitudes About Eye and Vision Health: Losing Vision Is Equal to Losing Hearing, Memory, Speech, or a LimbPosted by maribelsteel on 8/10/2016 at 9:20 AM
Maureen, what an incredible helpful post full of resources to follow up if a person is new to vision loss - thank you so much for your thorough information and links.
As a person with a visual impairment, it troubles me to think how much blindness is feared due to people's perceptions and fears of the unknown. I would like to encourage anyone reading this who fears going blind - it isn't worse than losing a limb or one's memory: it is about adapting to doing things differently to continue living with an independent spirit and honing skills in other areas of one's life that keep us living a very meaningful life. VisionAware is one of the best online resources I know for information on any aspect of vision loss. From personal experience, blindness brings us closer to the heart of humanity and it never ceases to amaze me how beautiful life is when we have truly accepted having low vision as just another challenge to overcome. Keep up this great research, with my appreciation, Maribel.
Re: New Research Exploring Public Attitudes About Eye and Vision Health: Losing Vision Is Equal to Losing Hearing, Memory, Speech, or a LimbPosted by MaureenD on 8/10/2016 at 1:48 PM
Hello Maribel: Thank you this response. I think it's important to hear directly from people who have vision loss and who can talk about their everyday lives with vision Impairment. Yes, blindness is feared, but there's something else to consider, too.
If you noticed, I made it a point to emphasize that this survey was not subjected to something called "construct validity." This is a measurement used by researchers to determine whether the research design – in this case, the survey – is able to measure what the research says it is trying to measure.
I know that sounds "researchy," but it's important, too. Since vision loss is feared (and that is documented), it's important to know that the people who constructed the survey and the survey questions weren't somehow influenced by their own fears/impressions about vision loss. The survey wasn't analyzed for this before it was administered, so we don't know.
And thank you for your appreciation of this information, but all I do is report on research I find that I think our readers might be interested in. Other dedicated people do the actual research! And the excellent doctors who write for the VisionAware website are the ones who provide the up-to-date information. (But I thank you for the compliment anyway!)
Re: New Research Exploring Public Attitudes About Eye and Vision Health: Losing Vision Is Equal to Losing Hearing, Memory, Speech, or a LimbPosted by SueMartin on 8/11/2016 at 1:19 PM
I just did a keynote presentation at a conference for vision rehabilitation professionals in Birmingham, AL. The title of the talk was “They Gave My Life Back: That’s Magic.”
“Who were they? Vera McClain and Jeff Elliott. Vera taught living skills and Jeff taught me to navigate the world I could no longer see. That was over thirty-three years ago.
Last month my husband of thirty-one years and I went skydiving to celebrate our thirty-first anniversary. On our thirtieth anniversary we went ziplining.
Does that sound like I’ve “lost” anything? I challenge anyone with 20/20 vision to keep up with us.
What if we change our language around blindness. Why do we talk about “losing” vision? I didn’t lose anything at all. I, in fact, gained a great deal.
I would not have met and married my husband, Jim, had I not become blind. I had a great career in the field of vision rehabilitation for twenty-two years. I’ve had a second career in accessible information and communications technology for almost nine years now. And at the moment I’m working on a full-time detail with the Office of Information & Technology within the United States Department of Veterans Affairs. And this new “job” has absolutely nothing to do with blindness or any other disability. I’m doing what I love – writing.
I guess what bothers me about this research are the assumptions and the language. Where’s the research on people who are blind that focuses on success?
Wait a minute. Did I just say that? Stories in the media that sensationalize blindness and blind people are equally fraut. I’m thrilled that someone who is blind has summited Everest. It’s cool to read an article about a sensational athlete who can ski better than most sighted people in the world. Congratulations to the guy who hiked the Appalachian Trail with his guide dog.
The problem with stories like that is that I am inevitably asked when I’m going to do something equally sensational. Sorry, that’s just not my thing. It’s not that I’m averse to risk. Climbing Everest or hiking over 2000 miles just sounds like way too much work to me.
Until societal attitudes towards blindness change peoples’ attitude towards blind people will never change. The language in this research perpetuates prejudicial attitudes towards people who are blind.
Blindness really isn’t a big deal.
Now, if these researchers would just read this…
When it comes to fear of blindness, telling people we disagree with that they’re wrong won’t help. For everyone on the vision spectrum - from fully sighted to totally blind - what’s needed is empathy and understanding.
On the one hand, sighted people need to understand that those who have never known, or who have long since moved away from, the sighted world lead full, happy and active lives. They also need to know that blind people don’t want to be pitied or patronised. And they need to know that blind people hate negative and unrealistic depictions of blindness in the media.
On the other hand, blind people need to understand that, for people who have received most of their information through their eyes for most of their lives, the idea and, for an increasing number of older sighted people, the reality of developing an incurable visual impairment that will probably get worse is terrifying. Sure, they will adapt over time, and learn other ways of coping, but first they have to grieve for their loss. And it is a loss. A huge loss. Imagine telling someone struggling with the loss of a spouse that it’s really no loss at all? That would send a message that the speaker does not understand what the grieving person is going through, and therefore cannot be trusted. That’s the message people new to vision loss take from upbeat or dismissive comments from the blind about their fears.
Of course societal attitudes to blindness are a problem, but they’re not the whole story. Consider Philip Roth’s childhood memory of a blind girl at his school: “I knew only two boys in our neighbourhood whose families were fatherless, and thought of them as no less blighted than the blind girl who attended our school for a while and had to be read to and shepherded everywhere. The fatherless boys seemed almost equally marked and set apart; in the aftermath of their fathers’ deaths, they too struck me as scary and a little taboo.”
This is not the result of stupid societal attitudes, it’s the result of a sighted child seeing a blind child and drawing his own conclusions. Of course discussion of the differences would help children to better understand disabilities, but it would be wrong to dismiss the child Roth’s reaction to the blind child to anything other than a sighted child’s entirely valid understanding of how much he would lose if he couldn’t see.
The results of a survey conducted by Slate also come to mind. "Asked what would have helped them with their grief, the survey-takers talked again and again about acknowledgement of their grief. They wanted recognition of their loss and its uniqueness; they wanted help with practical matters; they wanted active emotional support. What they didn't want was to be offered false comfort in the form of empty platitudes.”
To sighted people in the early stages of vision loss, cheerful stories of how great life is when you’re blind are false comfort and empty platitudes.
Lindley, I understand your point. When I work with a person experiencing vision loss, I try to find out what things they want to do. There isn't a single path to regaining one's independence. For each individual, there can be a wide range of motivators. Taking baby steps and offering solutions until one clicks is important. Not until the person is ready to move on can a person start moving forward and reclaim their life. Empathy isn't pity, it is often a missing factor in rehabilitation. That is why what we do as peer advisers is so important. We too have faced fear, struggled to learn new skills and moved through the world without sight. Warm Regards, DeAnna
DeAnna - Your understanding is so important - and often if you reflect back what people new to vision loss tell you about how frightened they are, they'll be so relieved that somebody understands that they'll start telling you about the positive things in their lives as well as the negatives - and start analysing the challenges and solutions all by themselves.
Maureen, thank you for sharing this research, and in spite of what you wrote about just being the messenger, this was written so the rest of us can understand it! I recently read the results of a 2014 poll from the Alliance for Eye and Vision Research, also concluding that we fear blindness as much as cancer, Alzheimers and HIV/AIDS.
This research makes me wonder why our profession, Vision Rehabilitation Therapists are not getting more referrals, both from docs and clients themselves. While we are not medical professionals it is certainly our job to help maximize the use of functional vision, and manage medical conditions such as diabetes to help prevent further vision loss.
Each time I pay for an RX for eye drops to manage glaucoma, I am grateful for the insurance I have, but wonder what sort of medical model prices the cost of preventative medications so high, that many have no choice but to go without. What is the social, not to mention the personal cost of rehab for an individual who looses their sight because they cannot afford eye drops or insulin?
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