Glaucoma patients report misperceptions, poor communication with doctors

ANAHEIM, Calif. — Many glaucoma patients do not understand that they can go blind from their disease, and one in 10 say they do not get enough information from their doctors. These are among the findings of a survey of glaucoma patients by the Glaucoma Research Foundation.

The survey results were announced at a press briefing here during the American Academy of Ophthalmology meeting.

The survey, which received more than 4,300 responses, probed patients’ understanding of glaucoma and their sources of information about the disease. It was sent to subscribers of the Glaucoma Research Foundation (GRF) newsletter, Gleams. Seventy-eight percent of respondents reported having had glaucoma for more than 5 years.

More than 40% of respondents to the survey did not understand that glaucoma can lead to blindness, and more than half did not understand the need to keep track of intraocular pressure, said Tom Brunner, the GRF’s president and chief executive officer.

Several questions explored the patients’ relationships with their physicians. Glaucoma patients are loyal to their physicians, Mr. Brunner said; about 70% of respondents said they have never switched physicians. And 87% of respondents said they look to the physician as their primary source of information on the disease.

But of those who have changed physicians, 61% said they switched because of a lack of communication with the physician, Mr. Brunner said. In addition, 11% reported that they did not get enough information from their doctors.

James D. Brandt, MD, spoke about the survey results at the press briefing from the physician’s perspective. He said that to counter these misperceptions, the physician must strive to empower glaucoma patients in the management of their disease.

Dr. Brandt said patient compliance with medication regimens is often poor because glaucoma is a “silent” disease. He said patient denial in glaucoma is similar to patient behavior in other silent diseases, such as hypertension, hypercholesterolemia and type 2 diabetes.

“Denial is a powerful adaptive behavior,” Dr. Brandt said. Patients are often unaware of their vision loss, he said, and demonstrating to them just how much they cannot see can be a powerful motivator.

Dr. Brandt outlined several important factors for successful patient-doctor communication. He said physicians must not delegate to technicians or nurses the task of explaining the disease to new patients. The physician must sit with the patient and take the time to explain the disease, even if this means asking the patient to wait until the end of the day so that the discussion can be uninterrupted.

The physician must answer questions honestly and anticipate the questions patients may be afraid to ask, such as “Am I going blind?” (He suggested that the answer to this question should be “No.”)

He also suggested asking patients’ permission before escalating therapy and telling them what kinds of side effects they can expect from medications. “Like anyone, patients don’t like surprises,” he said.

Representing the patient’s point of view at the briefing was Edith Marks, a glaucoma patient and advocate, and the author of “Coping with Glaucoma.” She agreed with Dr. Brandt that a good physician-patient relationship is crucial for successful treatment of glaucoma.

“There is something about the doctor-patient relationship that is curing in itself, aside from any medication, she said.

The GRF is a nonprofit organization that funds glaucoma research and education. Allergan is a major contributor to the GRF. Patrick Welch, director of marketing for glaucoma U.S. at Allergan was the moderator of the press briefing.