Doing More for Patients With Low Vision
The SmartSight program is getting retina specialists involved.
ELIZABETH LIPP, CONTRIBUTING WRITER
As the incidence of age-related macular degeneration (AMD) increases, more patients will need help dealing with visual loss and the quality-of-life issues that affect patients with low vision. Often, patients are confronted with a diagnosis of AMD without the proper education about what the effects of their disease will be and how they can live with decreased vision.
According to Lorraine Marchi, LHD, founder and CEO of the National Association for the Visually Handicapped (NAVH) in New York, "Very few retinal specialists do anything to counsel their patients about living with low vision. They don't see beyond what they're doing medically there has to be a broader scope. A number of people come to us very depressed," says Dr. Marchi.
This article will review the data on quality of life for patients with AMD, as well as discuss what is being done, and what needs to be done, to address their previously unmet needs.
LOW VISION AND QUALITY OF LIFE
It has been confirmed in a number of studies that in addition to attention to modifiable risk factors, a low-vision assessment to investigate the potential use of visual assistive devices may be beneficial to any patient who has experienced a decrease in vision due to a degenerative disorder, such as with AMD. Education regarding the clinical course of AMD and accurate information with respect to the known benefits of available treatments will impart a better understanding of this disease to patients.1
"I've done a lot of data gathering over the last 10 years in the area of quality of life," says Melissa Brown, MD, codirector of the Center for Value-Based Medicine in Flourtown, Pa., and adjunct senior fellow at the Leonard Davis Institute of Health Economics at the University of Pennsylvania. "When you talk to the patient vs the surrogate with regard to the quality of life resulting from low vision, the outcomes are very different."
Dr. Brown notes that, as in many other subspecialties, ophthalmologists tend to undervalue the need for vision and the effect of poor vision on one's quality of life. "The fact that vision is often undervalued makes one wonder if patients could be referred more often for [rehabilitative] services," she says.
Dr. Brown and her colleagues conducted a study published earlier this year about the loss of quality of life and financial consequences of low vision.2 "What we found was that the quality-of-life loss associated with macular degeneration is markedly underestimated by the general public, nonopthalmic physicians, and ophthalmologists who treat patients with this condition."
In a study published in 2004, Dr. Brown and colleagues published a short paper on the quality of life as seen through a time trade-off perspective.3 "By convention, utility values vary from 0.0 (death) to 1.0 (perfect health). The closer the value is to 1.0, the better the quality of life associated with a health state, while the closer the value is to 0.0, the poorer the quality of life associated with a health state," says Dr. Brown. "To analyze utility with the time trade-off method, many individuals are first asked how many years he or she expects to live. The individual is then asked how much time, if any, of those remaining years he or she would theoretically trade in return for normal permanent vision. The proportion of years traded is then subtracted from 1.0, representing perfect health, to arrive at the utility associated with a health state." For example, the average person with 20/200 to 20/400 vision in the better-seeing eye would trade 7 of 20 remaining years in return for perfect vision. The utility value associated with 20/200 to 20/400 vision is, therefore, 1.0-7/20 = 0.65. "Of great interest should be that the increase in quality of life when a person's vision is improved from 20/70 to 20/20, such as with a cataract operation, has been found to be very similar to the increased quality of life from improving one's vision from counting fingers to 20/100. Improving very poor vision significantly improves one's quality of life," says Dr. Brown.
If you need to be brought up to speed with what resources exist to help patients use the vision they have, visit the following sites:
► SmartSight: The AAO's initiative for vision rehabilitation, provides materials for both patients and physicians at http://www.aao.org/patient_ed/smartsight.cfm.
► The Macular Degeneration Partnership is a comprehensive source of information for both doctors and patients with special focus on low vision rehabilitation resources. Learn more at www.amd.org.
► MD Support (www.mdsupport.org) has comprehensive information on research and resources, and it serves as an international Internet support group for patients with AMD.
► Vision Connection (www.visionconnection.org) is managed by Lighthouse International in New York and has partner arrangements with the American Academy of Ophthalmology and the American Optometric Association, as well as other agencies.
► CMS Demonstration Project: This important project needs participants. If you are in 1 of the 6 geographic areas included in the demonstration, please visit their site for more information: http://www.cms.hhs.gov/DemoProjectsEvalRpts/MD/list.asp and click on Medicare Low Vision Rehabilitation Demonstration.
► The National Association for the Visually Handicapped: www.navh.org. The NAVH is a not-for-profit organization that provides assistance to the partially sighted. The Web site has information about the organization and its services and offers useful links to related sites and information about living with low vision.
NEW MINDSET IN LOW VISION
Dr. Marchi reiterates that improvement is not always seen on the eye chart. "Vision can improve because the brain becomes used to seeing things differently. If [patients] don't use it, they're going to lose it," she says. Dr. Marchi suggests that retinal physicians employ someone in their office, ideally a certified occupational therapist, to teach patients how to maximize what vision they do have.
Lylas Mogk, MD, medical director of the Visual Rehabilitation and Research Center at the Henry Ford Health System in Detroit said that in the current medical model, low vision is not addressed. "First, ophthalmologists don't think in terms of what they themselves can't fix, surgically or otherwise, and second, ophthalmologists are not set up to provide rehabilitation," says Dr. Mogk.
Jan Mitchell, BSc, of the Health Psychology Research Department at Royal Holloway, University of London and an author of several papers on the affect of AMD on quality of life agrees that many physicians do not know how to help their patients with low vision. "A medical doctor may look at this [patient] and feel there is nothing to be done. Patients at an early stage [of AMD] are not very visually impaired, so often the records of these patients are not kept in the National Health medical system. This can be a problem for the patient looking for rehabilitation if their vision deteriorates," says Dr. Mitchell. "Some aspects of rehabilitation, such as low vision aid provision, are the responsibility of health services but others are dealt with by social services, which is an additional problem here in the United Kingdom."
Patients who have vision of 20/70 or 20/80 are unable to drive or to read standard print, says Dr. Mogk, which can be problematic in the United States because legal blindness is classified here as vision of 20/200 or worse. "The way [low vision] services are set up require that patients be legally blind to receive them," she says. "There is a mismatch between who needs help and what services are available."
So who is responsible for identifying patients who need low vision services? Dr. Mogk says that young patients with low vision are often identified in the school system, but that with older patients, such as those with AMD, the responsibility most often falls to the ophthalmologist.
A key development in the field of low vision rehabilitation has been the American Academy of Ophthlamology's (AAO) SmartSight initiative. The goal of SmartSight is to provide physicians the tools with which to help their patients make the most of vision less than 20/40.
Dr. Mogk, who chairs the AAO's Vision Rehabilitation Committee and the SmartSight Taskforce, describes the program as one that is "directed internally kind of ophthalmologists getting our own act together."
"This stepwise program sets forth the ways that we can intervene with patients," explains Dr. Mogk. "There are things that we can do in our own offices to provide information, and within that information is more about how patients can access low vision services."
The stepwise approach of SmartSight is as follows (each level includes the steps from the previous level):
■ Level 1 Recognize and respond. This basic level of SmartSight encourages ophthalmologists to identify patients in need of low vision rehabilitation and to respond by providing the handouts supplied by the program, so that the patients can seek the services they need.
■ Level 2 Record, refract, Rx, and report. The next level adds the steps of recording the visual acuity precisely on the patient's chart, to refract the patient accurately, to prescribe vision aids as necessary, and to report to the primary-care physician that the vision loss of the patient may result in other medical issues (eg, depression, falls).
■ Level 3 (Basic Low Vision) Magnify, measure, map, and counsel. For patients with basic low vision, it is suggested that ophthalmologists who want to offer low vision rehabilitation services in their practices provide large-print materials, low-power magnifiers, and video magnifiers. Additionally, contrast sensitivity testing should be offered and detailed records kept of scotomas and preferred retina loci. Counseling should be available for patients at this level of service.
■ Level 3 (Advanced Low Vision) Prisms, power, and counsel. For patients with more advanced vision loss, prisms and higher-power magnification devices should be offered.
■ Level 4 Comprehensive vision rehabilitation. The highest level in the SmartSight initiative, level 4 offers all the aforementioned services, as well as including training for patients by an occupational therapist. In this level, patients would be trained to adapt to using their vision for all aspects of daily life.
The response to SmartSight has been good and Dr. Mogk says that interest in the initiative continues to grow. "We've given over 50 talks to various ophthalmologist groups and state societies," she says. "There has been an increase in the number of presentations having to do with low vision and vision rehab at the AAO this year, which I think is a direct result of the exposure from SmartSight."
Dr. Mogk says that the future plans of the program directors include a series of grand rounds presentations that would be included in physician training. The key to making physicians realize that they can do more to help patients with low vision, she says, is a consistent, persistent message.
CMS DEMONSTRATION PROJECT
The Centers for Medicare & Medicaid Services (CMS) have launched the Low Vision Rehabilitation Demonstration to study the impact of adding nonmedical vision rehabilitation professionals as Medicare providers of home-based vision rehab services. James Coan, of the CMS Office of Research Development and Information, heads the Demonstration project. Currently, only physicians and occupational therapists can provide these services nationally, he says.
"One of the big issues is the reimbursement for vision rehabilitation services," says Coan. "The demonstration has to determine what the benefit should cost, and for us to make that determination, we need participation in the demonstration from the physician community."
Currently, this project encompasses 6 sites New Hampshire, Washington state, New York City, Atlanta, Kansas, and North Carolina and is inclusive only for the residents of these areas.
Carefully observing the results coming in for this project is Bryan Gerritsen, who represents the Academy for Certification of Vision Rehabilitation & Education Professionals (ACVREP).
"The discouraging thing so far," notes Gerritsen, "is that it appears that ophthalmologists are not getting involved in the demonstration project. We're trying to get the word out about this project. It's a great opportunity for patients who really need low vision rehabilitation.
"We have 12 ophthalmologists in [Utah] who would love to add [rehabilitation therapies in the home] to their practice," Gerritsen says. "Unfortunately, the CMS is not currently expanding their sites due to the limitations on funds."
In states that are not included in the Demonstration project, occupational therapists (OTs) can be utilized; a limiting factor is insufficient numbers of OTs trained in vision rehabilitation and small numbers of ACVREP vision rehabilitation professionals nationwide.
PARTICIPATION IS VITAL
Low vision rehabilitation is vital to ensuring that patients with decreased vision from diseases such as AMD can use what vision they do have, and as a result, enjoy a higher quality of life. Providing basic information to patients on obtaining low vision rehabilitation services is necessary to start the chain of events that will lead them to that endpoint.
Gerritsen says that, regardless of the level of participation that ophthalmologists choose in low vision rehabilitation, buy-in is key. "We need the doctors' offices to provide these services for the patients or refer them; if they will do this, they will be able to change their patients' lives for the better. This is a great service not a money maker, to be sure, but patient word of mouth on a service like this would be a boon to practices, and providing these services would be beneficial to patients. Everybody wins." RP
1. Bourla DH, Young TA. Age related macular degeneration: a practical approach to a challenging disease. J Am Geriatr Soc. 2006;54:1130-1135
2. Brown MM, Brown GC, Sharma S, et al. The burden of age-related macular degeneration: a value-based analysis. Curr Opin Ophthalmol. 2006;17:257-266.
3. Brown MM, Brown GC, Sharma S, et al. Value-based medicine and ophthalmology: an appraisal of cost-utility analyses. Trans Am Ophthalmol Soc. 2004;102:177-85; discussion 185-188.
Elizabeth Lipp is a freelance writer based in the Philadelphia area.