Management Perspectives - Second in a Series of Four
Communication Is the Cornerstone Of Glaucoma Treatment
By Leon W. Herndon, M.D., Durham, N.C.By Leon W. Herndon, M.D., Durham, N.C.
Ophthalmologists treating glaucoma patients may find it useful periodically to step back and reevaluate how they approach the disease.
What changes might you implement in your practice to better meet the needs of your glaucoma patients? What can you do to increase their satisfaction and compliance with treatment? What measures can you take to improve their visual outcomes?
To answer these questions in a valuable way, it helps to view matters from the patient's perspective. Recent studies offer insights into patient perceptions of their disease and glaucoma's impact on their quality of life (QOL). Patients naturally are concerned about vision loss and the possibility of blindness. When educated about their disease and its potential consequences, glaucoma patients seek the most efficacious treatment available. Most are willing to tolerate temporary nuisance side effects to lower their IOPs and thereby minimize the risk of vision loss.
This article presents our current understanding of glaucoma patients' priorities. You'll find practical suggestions on how to facilitate physician-patient communication, prescribe effective treatments and enhance patient satisfaction.
Eliciting Quality of Life Issues With Glaucoma Patients
Type of Vision Affected
Ask if the patient has difficulty with:
Central and Near Vision
Glare, Lighting and Dark Adaptation
Adapted from: Nelson et al.13
Identifying the patient's perspective
Glaucoma patients naturally place a very high value on their vision. In one study, when asked how many years of their remaining lives they would sacrifice for perfect vision, on average, glaucoma patients or suspects would forfeit 6.1%, blind patients 33.1%.1 An analysis of 325 individuals with counting-fingers vision in the better eye would, on average, trade about half their remaining life for perfect vision.2
The question patients may want to ask you, but often don't, is, "Am I going blind?" Your patients' fears are not unfounded. Some 175,000 Americans over age 40 have low vision (best-corrected vision < 20/40), blindness (best-corrected vision < 20/200) or visual field constriction to less than 20° -- all attributable to glaucoma .3 Patients are rightfully concerned about developing visual impairments that might affect their ability to work, read, drive and generally enjoy their lives. Yet, our clinical experience tells us that over the long term, only a small percentage of glaucoma patients go blind. Most treated glaucoma patients will not go blind bilaterally in their lifetimes.
Still, even treated patients with IOPs in the normal range may progressively lose visual field. The Gallup Study of Eye Health found that nearly 40% of glaucoma patients reported vision loss.4 If yours is a diverse patient base, a subset of patients may progress fairly rapidly to end-stage glaucoma.
A recent study of untreated patients in a primarily black population in the West Indies found that 16% of glaucomatous eyes reached end-stage field loss within 10 years; this includes some eyes that had zero to minimal visual field loss at baseline.5 These data, coupled with epidemiologic evidence that only half of those with glaucoma know they have it, suggest that in some patients, failure to achieve low pressures can lead to rapid progression to blindness.
The price of visual impairment
Increasingly we're discovering that visual disabilities affect glaucoma patients' QOL, even if they haven't progressed to blindness. As their glaucoma progresses, their contrast sensitivity, depth perception and peripheral vision diminish.6 Glaucoma patients may mistakenly ascribe such changes to normal vision loss due to aging. If you don't ask your patients the right questions, they may not report such changes. In that case, you may be unaware that glaucoma is affecting the quality of your patients' vision and their QOL. (See "Eliciting Quality of Life Issues With Glaucoma Patients.")
Although blindness is the most extreme consequence of glaucoma, less severe visual deterioration can have a profound impact on patients' daily lives. Numerous studies have shown a correlation between visual field loss and lower QOL scores.7-13 Even minimal field loss compromises QOL.7,10 The consequences of field loss are troublesome in many ways. Patients may have difficulty reading a newspaper, watching television, recognizing faces, adapting to different levels of lighting, dealing with glare or noticing objects in their periphery.10 They may trip over curbs or bump into objects.10 Patients may lose confidence in their ability to perform routine tasks, all the while suffering depleted self-esteem.
Visual impairment may have serious repercussions in a higher likelihood of traffic accidents and falls. Drivers diagnosed with glaucoma were three to four times more likely to be involved in a car crash compared with those without the disease.14 Patients who acknowledge problems with their vision may limit how far they drive, or they may limit their driving to daylight hours.15 Many people equate driving with independence, and glaucoma patients frequently report that trouble driving seriously diminishes their QOL.16
Glaucoma patients fear blindness or any compromise in vision that might limit their daily activities. Thus, they may be amenable to more aggressive IOP-lowering than you might expect. A recent Glaucoma Research Foundation (GRF) survey found that glaucoma patients will tolerate cosmetic side effects in order to minimize disease progression and preserve vision.17 Some 92% of participants said they wanted a medication that would lower IOP the most, even if it caused temporary red eyes.
In short, glaucoma patients recognize that visual impairment worsens their QOL. They're highly motivated to preserve their sight and will tolerate transient side effects in favor of efficacy.
Effective communication between patients and physicians is critical for many reasons. One is patient retention. Almost 30% of glaucoma patients responding to the 2003 GRF survey had changed eye doctors at some point.17 Of those who switched, 60% did so because their doctors didn't explain enough about glaucoma and its treatment. Another 20% switched because they sought a lower IOP. These results indicate that the primary reasons patients leave their doctors are poor communication and a lack of aggressive treatment.
Elderly patients may be better-informed than you think. Perhaps contrary to expectations, many elderly glaucoma patients are Internet-savvy. More than 25 million adults over age 55 went online during October 2003.18 A survey of more than 2,000 elderly Internet users found that 70% used it to find health infor-mation.19 The Journal of the American Medical Association and the British Medical Journal have noted that patients often arrive for doctor visits with computer printouts in hand.20
Even so, physicians remain the primary source of glaucoma information. Eighty-seven percent of GRF respondents sought glaucoma information from their doctors at least some of the time;17 95% of those responding to the 2002 Gallup Study of Eye Health did so as well.4 Patients look to their physicians as the most credible source of information on glaucoma.
|What Glaucoma Patients Want to Know|
Will I go blind?
How far along is the disease?
How much optic nerve damage and visual field loss do I have?
What is my IOP? What should my IOP be?
What are my treatment options?
How do the eye drops help?
Will I have to use eye drops for the rest of my life?
What are the possible side effects of the medication you are suggesting?
Will the side effects go away? What side effects should I call you about?
What is my prognosis?
Sources: Coulter et al.27;Dawn et al.28;Dickinson and Raynor29; Kumar et al.30
Communication breakdownUnfortunately, up to 25% of glaucoma patients don't renew a medication prescription after the initial dispensing.21 Evidently, the message about the importance of consistent treatment isn't always getting through. This gap in doctor-patient communication involves two major issues: the information patients need, and how they get that information.
Glaucoma patients need to know that vision loss up to and including blindness is a possible consequence of their disease. Patients should be aware that vision loss in glaucoma often occurs slowly and may not be recognized until the loss is severe. Those who understand their disease and its consequences are more likely to start treatment and stick with it. Effective doctor-patient communication can improve compliance.
Regrettably, studies show that up to 58% of patients don't take their medicine as prescribed.22 Failure to comply with treatment can stem from changes in patient priorities due to comorbidities or economic issues. But it also can come from a lack of understanding of how important it is to comply with treatment to preserve vision.
How can you be sure your patients get the information they need? Seniors process information differently than younger patients do. The elderly tend to process new information more slowly. They need information in multiple formats. And they prefer face-to-face interactions.23 It's important that you explain glaucoma thoroughly to your patients, tell them about the tests they'll undergo (IOP, optic nerve, visual field) and emphasize the importance of reducing IOP.
It may help to provide written materials about glaucoma, which are available from the National Eye Institute (NEI) and other sources. To maximize patient education about glaucoma without a large investment of your time, you might refer patients to the Glaucoma Research Foundation (www.glaucoma.org, email@example.com, (800) 826-6693, (415) 986-3162). This agency can match patients to volunteer mentors to provide peer-to-peer communication about their experiences with glaucoma.
Maximizing treatment effectiveness
Patients need to understand certain practical issues surrounding glaucoma treatment.
► Your staff must teach them how to instill their drops correctly and consistently, even though patients won't notice an immediate, tangible improvement, as they would, say, with an antibiotic for an ear infection.
► Patients must understand the importance of using the medication as prescribed to prevent their vision from worsening. It might help to show patients printouts of their optic nerve and visual field tests to make the disease more real to them and motivate them to comply with treatment.
► Surveys show that a medication's burning and stinging are the chief complaints you'll hear from glaucoma patients. Patients need to know that if red eye occurs, it will diminish or disappear over time.24 Tell them, too, that their iris may darken or their eyelashes may lengthen. Distinguish between local, and systemic side effects.
► Consider administering the Glaucoma Quality of Life (GQL-15) survey, a glaucoma-specific instrument that asks patients to report their difficulty in performing 15 typical daily tasks.10 Although we know that glaucoma is an insidious disease in which symptoms don't appear until the late stages, this instrument may help your patients recognize early glaucoma-related visual disabilities that affect the QOL.
► Patients are likely to have many questions about their disease. For some typical questions, see "What Glaucoma Patients Want to Know." For general information about treatment options, you can offer patients written materials from the NEI and the GRF. Of course, for specific information about his diagnosis and prognosis, a patient must rely on his physician. There's no better replacement. Talking to your patient about the details of his disease takes time, but these discussions are essential for two reasons: The patient becomes an informed participant in treatment decisions and the discussion encourages compliance.
The managed care setting makes it difficult to involve patients in medical decisions largely because of time constraints. Deber and colleagues,25 however, found that patients want to be involved in decision-making if multiple treatment options are available.
Some of your patients may accept your treatment recommendations without question, but others will want a more active role in managing their disease. In this way, you may gain valuable insights into your patient's priorities for care. These insights in turn can guide you toward treatment decisions that best meet your patients' needs and expectations. An easily understood explanation of glaucoma's diagnosis, treatment and prognosis appears to be an important component of patient satisfaction.26
Improved communication can move a patient from denying the seriousness of his disease to recognizing the life-long need to comply with the treatment plan. This means identifying the patient's priorities with open-ended questions. For example, when evaluating patients at the first visit after prescribing a new medication, ask not only what side effects the patient has experienced, but also how bothersome they are and whether the patient believes a treatment change is in order.
Don't assume that patients consider cosmetic side effects unacceptable. Many may tolerate them as long as that treatment is effective. From the patient's point of view, cosmetic side effects are most likely outweighed by the benefits of early and effective treatment to preserve the quality of vision and the ability to enjoy life to the fullest.
Dr. Herndon is an associate professor of ophthalmology in the Glaucoma Service at the Duke University Eye Center in Durham, N.C.
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