Eleven years ago, then 39-year-old Chip Goehring of Doylestown, Pa., saw his ophthalmologist for his regular yearly checkup (he is near-sighted), when his doctor diag- nosed him with dry age-related macular degeneration (AMD). I just remember that when I was told about it, it was almost like I was watching a movie, he says. I became oddly detached from the whole thing.
Image courtesy: Jon Krause, www.jonkrause.com
Mr. Goehring is not alone. Vision loss has enormous psychological implications that can lead to devastating effects on a patients quality of life.
One study that looked at the effect of depression on visual function in AMD patients showed that of the 51 participants diagnosed with recent-onset bilateral AMD, 33% were depressed at baseline; they had worse visual acuity and greater levels of vision-specific and general physical disability than non-depressed participants.1 In addition, an increase in symptoms of depression over time predicted declines in the participants self-reported vision function, independent of their medical status or visual acuity changes.1
Patients with AMD are not the only individuals in emotional turmoil as a result of vision loss. Stroke survivors and those with diabetic retinopathy, glaucoma, poor refractive surgery outcomes, head traumas and more also grapple with this problem.
Something else to consider: While there are currently more than 1 million Americans past age 40 who are blind and 2.4 million who have some sort of visual impairment, a recent study says both rates will double in the next 30 years as a result of aging baby boomers.2
In the case of those who have had poor refractive surgery outcomes, Barbara Berney, president and managing director of the Surgical Eyes Foundation Inc. (a public charity that assists patients who live with such complications), says the surgicaleyes.com Web site gets anywhere from six to 10 new registrations a day and has more than 2 million hits thus far.
I think the emotional aspect of losing ones vision is ignored, minimized and trivialized, Ms. Berney says. On [the Web site] bulletin board, I see posts from people all the time that read I cant take this anymore, and If I have to live the rest of my life this way, Im going to kill myself.
As a primary-care provider, you must meet all your patients needs. That includes their emotional ones. The following are steps you can take to make sure vision loss does not affect your patients quality of life.
Helpful Resources 1. The American Macular 2. Lighthouse International 3. The Jewish Guild for the Blind 4. Surgical Eyes Foundation 5. National Mental Health Association 7. American Diabetes Association 8. The Glaucoma Foundation 9. Glaucoma Research Foundation YOUR PATIENTS NEED INFORMATION
Degeneration Foundation (AMDF)
P.O. Box 515
Northampton, MA 01061-0515
Web site: www.macular.org
111 East 59th St.
New York, NY 10022-1202
Web site: www.lighthouse.org
15 West 65th St.
New York, NY 10023
Web site: www.jgb.org
533 South Howard Ave., No. 842
Tampa, FL 33606
Web site: www.surgicaleyes.com
2001 N. Beauregard St., 12th Floor
Alexandria, VA 22311
Phone: 1-800-969- 6642
Web site: www.nmha.org/
6. National Institute of
Mental Health (NIMH)
Office of Communications
6001 Executive Blvd., Room 8184
Bethesda, MD 20892-9663
Web site: www.nimh.nih.gov
ATTN: National Call Center
1701 N. Beauregard St.
Alexandria, VA 22311
Web site: www.diabetes.org/type-1-diabetes/eye-complications.jsp
116 John St., Suite 1605
New York, NY 10038
Phone: (212) 285-0080
Web site: www.glaucomafoundation.org
490 Post St., Suite 1427
San Francisco, CA 94102
Web site: www.glaucoma.org
Be Aware of Depression
According to the National Mental Health Association (NMHA), symptoms of clinical depression include:
Persistent sad, anxious or empty mood.
Sleeping too much or too little.
Middle of the night or early morning waking.
Reduced appetite and weight loss, or increased appetite and weight gain.
Loss of pleasure and interest in activities once enjoyed, including sex.
Restlessness and irritability.
Persistent physical symptoms that do not respond to treatment (such as chronic pain or digestive disorders).
Difficulty concentrating, remembering or making decisions.
Fatigue or loss of energy.
Feeling guilty, hopeless or worthless.
Thoughts of suicide or death.
According to the National Insti- tute of Mental Health, (NIMH) clinical depression (depressive disorder, manic depression, and dysthymia, a milder, longer lasting form of depression) affects more than 19 million Americans every year.
Amy Horowitz, D.S.W., who heads the Arlene R. Gordon Research Institute at Lighthouse International (a not-for-profit organization that specializes in vision impairment and vision rehabilitation), is in the data analysis portion of a National Eye Institute (NEI)-funded study on depression, disability and rehabilitation in vision-impaired elders. The study involved 584 subjects, ages 65 and older who have AMD, glaucoma, cataracts and diabetic retinopathy.
Her findings thus far: One-third of those in the low-vision population experienced very significant psychological consequences as a result of their vision loss, and those with more severe depression were less likely to receive helpful services once they had applied.
Goldie Dersh, Ph.D., vice president of The Jewish Guild for the Blinds Behavioral Health Services, knows all about the psychological effects of vision loss. (The Guild is a non-profit, non-sectarian agency that serves the visually impaired, blind and multi-disabled.)
Our clients are people who have significant vision loss and who, because of this, have become truly demoralized, Dr. Dersh says. And often, we are able to identify learned helplessness, which is where people with vision loss simply give up on activities of living and stop trying, even though with training and support, they may be able to accomplish the same activities.
She adds that elderly people tend be more depressed about vision loss. They have lost family members (maybe a spouse) and probably have had other significant medical problems, so that accumulation of losses makes their vision loss even more devastating, she says.
Dr. Dersh says that because moti-vation is one of the most significant factors in how a person adjusts to vision loss, The Jewish Guild for the Blind suggests eye care practitioners ask the following two questions, which may indicate if their patient is depressed and needs help:
During the past month, have you often been bothered by feeling down, depressed or hopeless?
During the past month, have you often been bothered by little interest or pleasure in doing things?
A positive response to either question indicates a need for screening by a mental-health professional, she says.
But, psychiatrist Barry W. Rov-ner, M.D., who was one of the researchers of the first study mentioned, says that an answer that indicates the patient has given up the things he or she enjoys can be tricky. For many people with AMD, for instance, vision loss has caused them to relinquish many valued activities, he says. So, the question you may really want to ask is given that youve probably lost some of your ability to pursue activities, have you been able to find new ones to keep you interested, or do you find that you are doing little and that you are at a loss of how to live your life?
In terms of referrals to mental- health professionals, both doctors concede that getting older individuals to agree to such an appointment is tough. There is not only a stig- ma attached to vision loss; there is a stigma attached to counseling as well, so there is a lot of reluctance by elderly people to talk about their problems, Dr. Dersh says. As a way of convincing this population to accept treatment, she and other Guild staff talk to them about how emotions, especially stress, can affect physical health. She says that after thinking about this, they tend to be more receptive. Dr. Rovner suggests referring this population to their primary-care physicians.
A poster presented at last years ARVO (Association for Research in Vision and Ophthalmology) examined the effectiveness of communication of information and available resources to patients who have AMD.3 The study was done to assess both the knowledge and understanding AMD patients have about their diagnosis.3 There were 50 consecutive participants, and 86% of them had vision loss in one or both eyes.3
Results showed that:
84% were interested in learning more about AMD.
63% felt that learning more would help alleviate their fears.
64% did not know how to access or use resources such as AMD organizations.
38% said they did not know where to find trustworthy and comprehensive information.
98% had never attended an AMD support group.
82% had not been counseled on living with AMD.
72% had never been referred to a low-vision specialist.
68% were scared of their future with AMD, and an additional 12% werent sure.3
Upon diagnosis, 34% felt they would go completely blind from AMD, and they rated their concerns higher than those patients who knew otherwise.3 Also, those patients who werent sure complete blindness was possible; rated their fears the highest.3 Finally, 72% felt they had gotten most of their information from their doctor.3
As far as time spent with their doctor in discussing their diagnosis, 48% said they spent 10 minutes with their doctor, while 28% said they had spent less than five minutes.3 Finally, only 58% said they left their appointment feeling they had an adequate understanding of their diagnosis.3J.K.
Educate Yourself, And Provide Resources
While Mr. Goehring says his doctor was very compassionate when giving him his diagnosis, he was bothered by the fact that his physician could not provide him with information or resources. As a result, he founded the American Macular Degeneration Foundation (AMDF) (a non-profit organization committed to the prevention and cure of macular degeneration) in 1995. I dont think there were many resources for my doctor to hand out or that he knew of at the time, he says.
Last Christmas, Mr. Goehring saw a different doctor because his prior one had retired. During his examination, he was shocked when he encountered the same problem. The doctor looked in my eyes and that was it, he says. There was no discussion about heres what you might do to slow it down, nothing about lutein/xeazanthin, the AREDS [Age-Related Eye Disease Study], nothing!
The bottom line? Stay on top of the latest research, and make time to share your findings. Patients are in desperate search of information, and I think its very important to convey that all is not lost, Mr. Goehring says. (See Your Patients Need Information, p. 46.)
One of the worst things an eye care professional can say is there isnt anything more I can do for you, because there is whole realm of rehabilitation services that are available to help people both cope and learn new ways of doing things, Dr. Dersh says. She uses low vision clinics, support groups and courses on daily living.
One successful case that stands out in Dr. Dershs mind involved a 45-year-old woman who had come to the Guilds psychiatric clinic after being hospitalized for a head trauma that left her blind. She was really devastated, feeling her life was over and feeling that her career as a litigator was over, too, Dr. Dersh remembers.
Through both individual and group counseling, Dr. Dersh says, the woman became motivated to go through a complete course of vision rehabilitation, in which she was taught new ways of performing her job. These new ways included the use of a loudspeaker-equipped computer outfitted with software from JAWS (Job Access With Speech screen reader that works with a computer to provide access to software applications and the Internet), the extensive use of tape recordings and the use of volunteers and assistants who would read cases and opinions to her.
She went right back to work because she had significant motivation and a lot of resources once her depression had lifted, Dr. Dersh says. The severity of the vision loss does not indicate whether or not there is going to be depression. The coping mechanism of the person and his or her internal resources that deal with life stresses really determines susceptibility.
Research has shown the same thing. In 2002, 231 patients with advanced AMD were studied to see if a self-management program consisting of health education and enhancement of problem-solving skills would improve their quality of life. 4
The participants were randomly placed in one of three groups: a series of 12-hour tape-recorded health lectures (74), a waiting list (72) and a self-management program (86) that was held for six weeks.4 The self-management program had eight to 10 participants meet weekly for two-hour sessions that incorporated didactic presentations and group problem-solving with guided practice.4
Compared with controls, the self-management group showed significant improvements in both measures of mood and function.4 And, these changes were significantly greater for those who were depressed than for those who were non-depressed.4 In addition, decreased emotional distress was linked to increased self-efficacy and perceived social support.4
Similarly, in 2003, a study evaluated an adaptive skills training program for 22 patients with advanced bilateral AMD.5 They were randomly assigned to either the treatment program or control group. The treatment program covered systemic problem solving, resource and activity management, correlation between emotions and actions, experience exchange and disease information. The program consisted of five group sessions, once a week for two hours.5
Results showed that those patients in the treatment program had greater improvements in both their meas-ures of mood and function, when compared with the control group.5 These improvements included:
Less difficulty in doing everyday skills.
An improved willingness to participate in leisure activities.
Subjective independence and subjective future perspective, with reduced signs of depression.5
1. The American Macular
2. Lighthouse International
3. The Jewish Guild for the Blind
4. Surgical Eyes Foundation
5. National Mental Health Association
7. American Diabetes Association
8. The Glaucoma Foundation
9. Glaucoma Research Foundation
YOUR PATIENTS NEED INFORMATION
Be Compassionate, and Validate Your Patients Complaints
Mr. Goehring says he has heard through the AMDF that physician compassion is sometimes lacking. I think what happens sometimes, is that, because doctors are trained to treat one thing, they do not always see the whole picture, he says. I also think that in some cases, the patient may be so shocked by what he or she is hearing, that their shock and dismay may influence the way they perceive their doctors responses.
Ms. Berney has a different perspective. The things I hear the most from people who post on our Web site are the doctor doesnt believe me, he thinks Im a whiner, or he says I should be happy because I dont have to wear glasses, she explains. When patients say, my vision stinks, O.D.s need to believe them over the Snellen chart.
Surgical Eyes executive director, David L. Hartzok, O.D., who practices in Chambersburg, Pa., agrees. O.D.s really need to be aware that the Snellen acuity does not represent all there is to vision, he says. So, just because a patient can read the eye chart, doesnt mean we should dismiss his or her complaints.
Dr. Hartzok believes there are three other reasons these patients complaints tend to be downplayed. A lot of the things these patients complain about, we cannot see ourselves, so I think there is this tendency to think, well, it looks good to me. You look like every other patient I see, and those patients arent complaining, so whats your story? he says. He also believes these patients complaints are minimized because eye doctors either cannot figure out what is wrong, or they do know what is wrong but lack a solution.
Finally, Dr. Hartzok believes that a lack of education has caused this populations complaints to be dismissed. Courses at seminars and meetings address situations that are solvable, he says. Poor refractive surgery outcomes are not simple.
Dr. Hartzok says he never dismisses patients complaints, especially those who have poor refractive surgery outcomes. I dont care how many wavefront readings you do or aberration studies; I dont care about the numbers youve crunched looking at this and that, he says. You will never know what patients are seeing.
Dr. Hartzok tries to help patients who have poor refractive outcomes through a rigid contact lens he invented. There are certain aspects of vision complications after refractive surgery that we cant yet put our fingers on, but I can help to a degree, he says.
So can you. Meet the needs of your patients by looking beyond the visual aspect of vision loss. Depression is something that can limit a persons ability to cope and can, in addition, cause even more significant problems in terms of medical health, Dr. Hersh says. But, when its identified and treated, there is a whole world of opportunities for a person to deal with life.
1. Rovner BW, Casten RJ, Tasman WS. Effect of depression on vision function in age-related macular degeneration. Arch Ophthalmol 2002 Aug;120(8):1041-4.
2. The Eye Disease Prevalence Research Group. Causes and Prevalence of Visual Impairment Among Adults in the United States. Arch Ophthalmol 2004 Apr;122(4):477-85.
3. Kurz PA, Ward M, Cooney MJ. Assessment of effectiveness of communication of information & available resources to patients with age-related macular degeneration. ARVO Abstract # 1827, 2003.
4. Brody BL, Roch-Levecq AC, Gamst AC, et al. Self-management of age-related macular degeneration and quality of life: a randomized controlled trial. Arch Ophthalmol 2002 Nov;120(11):1477-83.
5. Miller DW, Birk T, Hickl S, et al. Evaluation of an adaptive skills training program for patients with advanced bilateral age-related macular degeneration: A prospective randomized trial. ARVO Abstract # 1285, 2003.