Managing the Reluctant Glaucoma Patient

Strategies to Compel compliance from the non-symptomatic.

By Andrew Rabinowitz, MD

Management of primary open-angle glaucoma (POAG) involves dealing with patients who have a chronic, progressive disease that can lead to blindness over the course of a patient's lifetime. In some patients, the rate of sight loss can be rapid and subjectively noted to occur over weeks to months. In most patients, however, the rate of sight loss is gradual and often requires years to document progressive changes on both subjective and objective testing.

We are all aware that monochromatic black and white automated perimetry is the gold standard for monitoring subjective sight loss that is the consequence of glaucomatous neuropathy. We are also aware that visual field defects are not seen until a moderate degree of nerve damage has occurred. Thus, both the patient and the physician struggle to make valid assessments of stability or progression in patients with POAG.

It has been suggested that nearly half of the patients with glaucoma in the United States are not aware that they have the disease. This is at least partly due to the fact that POAG is often an asymptomatic disease until very late in the disease cycle. It is not unusual for a patient to be under treatment for POAG for a decade or more yet remain unaware of any subjective sight compromise. Additionally, as difficult as it is for a patient to gain awareness of any initial sight loss, it is equally difficult for patients to have subjective awareness of any progressive changes over the course of their disease.

The absence of symptoms at the time of diagnosis as well as during the course of the disease creates the greatest challenge in treating POAG. Compliance is often the greatest hurdle in the management of POAG. The disease itself is remarkably asymptomatic in a great number of cases. The treatments, however, often provoke profoundly negative symptoms for patients using topical and oral glaucoma medications. Patients thus are faced with a dilemma. Namely, the disease itself does not bother them but the treatments have a very negative impact on their quality of life. This paradox contributes to consistently poor compliance with their treatment regimen.

The medications used to control IOP can reveal a broad array of side effects. These can vary from mild, such as burning and stinging, to severe life-threatening side effects such as respiratory arrest. The prostaglandins are globally reviewed as the ideal class for first-line treatment. The prostaglandins have only a few notable side effects, which range from conjunctival hyperemia to mild pigmentary changes of the periorbital skin. Additionally, there is the well-known side effect of eyelash growth, which is generally well tolerated.

The alpha-agonists are a second class of medications. This class is also very well tolerated. However, a small number of patients can experience dry eyes and dry mouth. An even smaller percentage of patients will report dizziness or fatigue, usually 30 to 60 minutes after instilling their medication. The beta-blockers promote a myriad of side effects, including generalized fatigue, shortness of breath and bradycardia. Finally, the carbonic anhydrase inhibitors are well tolerated. The side effects they reveal include burning and stinging upon instillation to blurred vision. They also can cause taste perversion due to the presence of carbonic anhydrase isoenzyme in the taste buds.

With these obstacles to compliance in mind, this article will address strategies that I have used — and continue to use — in attempting to convince non-symptomatic and noncompliant patients to take their medications on the prescribed schedule.

Assessing Compliance

A great deal of my visit with each patient is spent assessing whether they are using their medications and, if necessary, taking the time to educate them on the importance of treatment.

If left untreated, a patient with mild POAG at age 55 with a starting intraocular pressure of 24 mm Hg and full visual fields and early cupping may require a decade to develop significant visual field loss. If the patient uses the prescribed treatment regularly, or even sporadically, he or she may extend the onset of significant visual field loss to multiple decades.

Cardiac patients use statins to avoid vascular disease. Success of statins is measured in the absence of symptoms such as chest pain. The product of statin use is the absence of disease events such as angina or stroke. Just like using statins for decades can help prevent such cardiac events, using eye-drop medications can result in the absence of sight loss. Thus, the reward of complying with the suggested regimen is rarely appreciated by the patient. Far more often, the patients experience and comment on the adverse events or side effects of their medications — and not about the disease these medications are designed to prevent. The treatment is often more problematic and symptomatic than the disease itself.

The Challenges of Achieving Compliance

Encouraging patients to use their medications today so that they may preserve their vision decades into the future is often quite challenging because the patients cannot appreciate a finite endpoint or “goal.”

I will say to a patient “I suggest that you use this medication so that you do not lose vision.” The patient will often ask me, “What will I gain from using these medications?” My response is to tell the patient that rather than “gain” anything, he or she will hopefully prevent the “loss” of sight. To many patients, this is a vague and difficult to comprehend endpoint. This disconnect between the treatment and result of the treatment likely contributes to often-cited noncompliance rates, which reaches approximately 50% in many studies — not to mention the problems that many glaucoma patients have in instilling their drops properly so as to obtain the full effects of the medication. These failures are especially prevalent in the frail and the elderly who live alone and do not have a caregiver or loved one to instill the drops correctly.

Approaches to Gaining Compliance

I often try to show patients simulated images of the sight loss that occurs with all stages of glaucoma. Unfortunately, this usually has as much impact on compliance as does showing a lifelong cigarette smoker a poster of lung damage generated by tobacco. This is the basic “eat your peas” strategy that is designed to make the patient aware of the positive effects of compliance and the negative consequences of noncompliance.

There is no single approach that I have found to be globally effective with clearly noncompliant patients. The use of “reminder” devices and easy-open bottles is helpful with patients who have the intention of being compliant but is of little or no use with patients who refuse to take their medications. With these noncompliant patients, on most occasions I initially try to find some common thread of interest or conversation. This becomes the scaffold upon which I attempt to build a discussion regarding the consequences of failure to lower IOP. I concurrently attempt to discuss the product of ideal compliance.

Such a conversation may go something like this.

Me: “I enjoy a really entertaining movie. Have you seen any good ones lately?”

Patient (Mrs. Jones): “I took my grandchildren to the latest Shrek movie and we all got a kick out of that.”

Me: “Well, Mrs. Jones, I may take my children to see that one. And, you know, if you take your eye drops as scheduled I'm pretty sure you'll be able to enjoy movies with your grandchildren for many years to come.”

With patients who are more resistant to a direct suggestion from me, I have at times asked a resistant patient if he or she would like to have a conversation with one of my long-time glaucoma patients who has been able to retain vision by being faithful to the medication schedule. This kind of “patient-to-patient” approach can work in some instances, especially if your “model patient” is very good with people and can explain the benefits of taking medications in a simple and sincere manner.

Occasionally, I will schedule an in-office educational seminar for all of my glaucoma patients, using the meeting to provide current information on the disease, answer their questions and also touch on the consequences of noncompliance. For these meetings, I request all of my noncompliants to attend.

I have also taped testimonials from my long-time patients who have either retained vision through being compliant or lost significant vision through noncompliance. I then provide the tapes to both new and noncompliant patients.

Look Deeper for Blatant Noncompliance

When patients reveal blatant noncompliance after a number of visits, I try to probe into their psyche to determine if there are any emotional, financial or other obstacles that I can help them overcome. Often, fear that the medications will be “harmful” in the long run leads to habitual non-compliance.

Patients will often begin to think that organized medicine is naïve to the “potential dangers” of chronic use of glaucoma medications. I try to educate the patients about the long-term safety data available on the medications we most commonly use. Some patients have a difficult time acknowledging that they in fact have glaucoma or are at least “at risk” for glaucoma. In these patients, I will try to enlighten them regarding the data we have obtained, their inherent risk factors such as family history, or the presence of myopia or diabetes. If possible, I enlist the help of family members to try to “partner” with me in terms of encouraging the patient to remain compliant, and to “partner” with the patient and help them remember when to instill the medication — and often instill the medication for the patient — to improve compliance. I always encourage patients to bring at least one family member on all visits so that the patient has a “second set” of ears.

I have found that when patients develop age-related memory loss, they will simply forget to use their medications on a routine basis. This can be evidenced by wide swings in their eye pressure when comparing one visit to the next. This confusion or forgetfulness becomes even more pronounced when a patient is on multiple medications.

Compelling Compliance

I try to provide the patient with written instructions for proper eyedrop instillation. This written information will include the name of the medication, the eye or eyes to be treated, the color of the “top” of the bottle of eyedrops. I will color-code the writing on the instructions to match the top of the bottle of eyedrops.

In the management of glaucoma, the following colors represent particular families of medications. Yellow represents beta-blockers. Aqua represents prostaglandins. Orange represents carbonic anhydrase inhibitors. Finally, purple represents the alpha-agonists.

I have found that having markers in these colors allows for a more simplified instruction sheet. In this way, we can avoid the patients having to know the names of their medications. This color-coding system has been used for decades and I believe continues to offer a more simplified method of patient instruction.

Beyond all methods, I have found that the sheer act of repetition of visits and the reinforcement from the doctor can provide the most enduring and successful means of compelling the patient to become or remain compliant. If I can visit with a patient at intervals of three to four months, I can begin to establish a therapeutic relationship with most patients. This frequency allows me to build a familiarity with the patient's ups and downs, as well as their propensity to be compliant or to remain noncompliant.

Periodic assessment of their visual field function and discussing the results with the patient will allow the patient to feel “connected” to the cause of IOP reduction and glaucoma prevention. If a patient has yet to reveal visual field loss, the review of a “normal field” can serve to reassure the patient that they are still functioning at a very high level. This positive reinforcement serves to promote a positive attitude toward disease management and helps to keep the patient engaged. If the patient reveals visual field progression, this can serve as an opportunity to show the patient the consequences of elevated IOP. Often, this visual reference serves to provide patients tangible evidence of the consequence of failing to lower their eye pressure.

It is important to provide the patient with the opportunity to be honest about their compliance or they will simply say what they think the doctor wishes to hear. In the long run, it is the relationship between the doctor and the patient that allows for the successful treatment of a chronic disease such as glaucoma. OM

Andrew Rabinowitz, MD, is a glaucoma specialist at Barnet Dulaney Perkins Eye Centers, a multi-location practice based in Phoenix. He can be reached via e-mail at andrewrabinowitz@aol.com. He has no financial interest in any product mentioned in connection with this article.