Glaucoma Care from the Patient's Perspective
Focus group gives physicians a rare opportunity to hear candid comments.
BY ROCHELLE NATALONI

Glaucoma patients are more willing to endure side-effects from their medications than ophthalmologists generally believe, and they often feel that they don't get enough time or information from their eyecare providers during office visits. These were two insights that came out of a recent focus group of glaucoma patients.

The purpose of the focus group, led by a moderator, was to gather information about the amount and depth of information that patients receive from their physicians regarding glaucoma and glaucoma therapy. A group of ophthalmologists, including several glaucoma specialists, monitored the patient dialogue. Patient participants were not aware of the presence of the physicians, and were encouraged to be candid in their responses.

Some of the questions posed to the patients and the answers they gave were:

When you were first diagnosed, what did the doctor tell you about the disease?

• He didn't tell me too much, but gave me information to read.
• He was very general.
• He didn't really tell me anything.
• I knew more because I had to put drops in my mother's eyes.
• I learned from other people or found out on my own.
• I still don't know about it.
• He put some of us in a room and put a video on, but he never sat down one-on-one to discuss it.

How do you view glaucoma in relation to other diseases?

• I think glaucoma is as serious as cholesterol.
• I don't think it is as serious as high blood pressure or diabetes.

In getting the pressure down, were you willing to deal with the side-effects?

• Yes, as long as it is not severe.
• Yes because most of the time it is not harmful.

Physician Reaction

The participating physicians were asked to share their impressions following the patient discussion. Among the questions posed to them and their replies were:

If a patient comes in with a red eye, will you switch the medication?

• Usually, if they complain.
• As long as they don't complain and their glaucoma is controlled I don't switch them.

Was there anything that you heard that matched your expectations?

• They understood that if you don't treat glaucoma you could go blind.
• I was surprised how they found information about the disease; many don't use the Internet.

In an interview with Ophthalmology Management, Edward J. Chang, M.D., said participating in the focus group was an eye-opening experience. "I think we were somewhat taken aback by what the patients actually know," he said. "There were some who thought they had a pretty reasonable knowledge base, but it turned out that once they started discussing particulars they really weren't very knowledgeable at all, but they are hungry to acquire more knowledge."

I would be very surprised if any of the participating physicians didn't learn something from that session. -- Edward J. Chang, M.D.

Dr. Chang is a glaucoma specialist in private practice with Everett & Hurite in Pittsburgh, Pa., and a clinical instructor at the University of Pittsburgh Medical Center. He said he was surprised to learn that the patients were willing to withstand pharmaceutical side-effects in exchange for lower intraocular pressure. "We've always had a belief about what patients will tolerate in terms of side-effects. When the patients were discussing this, and the information came out that the lower the pressure the better off you are, the patients said they would be willing to put up with some of the side-effects such as redness to obtain better pressure control," he said.

Both Dr. Chang and John P. Nairn, M.D., a glaucoma specialist in private practice with Associates in Ophthalmology in Pittsburgh, Pa., pointed out that the consensus among the patient-participants was that physicians do not spend enough time with them explaining the ramifications of the disease and its treatment.

"So many of the patients feel a lack of communication or involvement with their physician," said Dr. Nairn. "There were some who said they felt like the time wasn't being taken initially to clearly explain the disease, and then even in follow-ups they were dissatisfied with the amount of time their physician spent discussing how they're doing and the impact that the disease is going to have on their life. I was a little surprised to see that because we spend so much time in my practice trying to educate patients," he added.

Dr. Chang pointed out that the participants were seeking out information about glaucoma from alternate sources because they felt they weren't getting adequate time and information in the office. "They talked about getting information about their disease from neighbors and virtual strangers," he said. "Since listening to what the patients thought and what their desires are, I definitely have made an even greater effort to ensure that our patients are well educated in the disease, not just that they have glaucoma but how important it is that they take their drops and what the consequences will be if they don't."

With respect to the participants' comments about getting inadequate information from their physicians, Dr. Nairn said in some instances that may be due to a lack of understanding or an inability or hesitancy to ask questions. "That happens all the time," he said. "A lot of these patients are elderly and they're anxious about what they're being told. When people hear the word glaucoma their first and foremost reaction is that they're going to lose their sight, and the reality is that can occur. Often when someone is first diagnosed they're so taken aback by the news that they 'turn off' what you're saying," he added. Even so, he was concerned that the focus group participants weren't more persistent about obtaining information. "I was a little surprised that they were willing to go along without truly understanding," he said.

Time Well Spent

The 'fly-on-the-wall' perspective afforded from the focus group setting was an excellent opportunity, Dr. Chang said, to get the kind of feedback from patients that is unlikely in the office. "I would be very surprised if any of the participating physicians didn't learn something from that session," he said. "It's rare when we have a circumstance where we can actually hear what our patients think because when we see them in the office we're not asking them if they're happy or what they think, we're asking them whether they're taking their drops." (Most of the participating physicians had at least one patient in the group.)

"We all try to do our best, and we probably tend to think that we're doing a good job with regard to explaining to our patients what their problems are," said Dr. Nairn, "but this experience made me wonder if sometimes we don't need to do a little better."

The focus group, which was called "Behind the Glass," was conducted by Allergan.