The Glaucoma Research Foundation (GRF) Patient Summit highlights the latest in glaucoma treatment advances, giving patients practical information to help them live their best lives with the condition. This includes learning how to take charge of your own care. In this last recording in a series from the fourth annual Summit, a panel of five experts answers glaucoma patients’ questions concerning how they can advocate for themselves.*

‘When should a patient see a glaucoma specialist?’ (1:42)

When considering whether or not to see a specialist, a team approach is best, says Lisa M. Young, O.D., FAAO, an optometrist at Chicago Glaucoma Consultants. Whether diagnosed by an optometrist, general ophthalmologist, or glaucoma specialist, each clinician often has “a little niche that they’re great at” and all can be part of a patient’s eye care team. 

How best to prepare for an eye doctor visit? (5:24)

Lisa Rosenberg, M.D., Clinical Associate Professor of Ophthalmology at Northwestern University, divides information for new patients over a series of appointments so it’s easier for them to absorb. She also encourages patients to do their own research and advises them to: 

• Bring in their eye drops or have pictures of them for easy reference,
• Bring their questions, and 
• Bring a companion who can act as a “second pair of ears” and who can record answers. 

How hard is it to take medications and how important is it to remember them? (9:16)

Glaucoma patient Phillip Edward Van Lear says that what he’s learned over time regarding medication compliance is “there is a certain amount of accountability that we have to accept as patients.” Since it’s important to be compliant to avoid pressure fluctuations that could make vision worse, Van Lear sets phone alarms as reminders to take his eye drop medications. He notes that compliance has become easier as he’s become proactive about self-advocacy. 

Many new patients are also never shown how to take their eye drops, which can affect compliance. Rosenberg suggests asking your doctor whether or not you’re instilling them properly. If you find that you’re running out of mediation in a short period of time, for example, this could indicate improper use.

Why do eye pressure and treatment vary between patients? (16:38)

The key is for patients to understand that what is normal for one person may not be normal for the next, Young says. There are three glaucoma risk factors that are changeable over time, adds Rosenberg: 

• Age,
• Visual field, and
• Eye pressure.

Individual visual field testing and optic nerve measurements are more important factors in glaucoma management than eye pressure alone. A younger person may have a more aggressive treatment plan than someone very old with very mild glaucoma whose prognosis is excellent. 

If a doctor only has 15-20 minutes or less per patient, how do we ask our questions or have more time for questions?’ (19:30)

Young recommends having your questions in hand when you arrive. These can also be communicated to the person who first sees you or other staff so the doctor can prioritize the most pressing questions once you’ve been examined. Rosenberg allows for additional questions by phone.

Van Lear says that he shares as much as he can about how he’s feeling with the first person in the examining room. This allows him to focus on his questions when he finally sees the doctor.

Experience has taught what to ask, and when. Perceiving his vision loss over time was a reality check that caused him to “take ownership” of his glaucoma and ask more pointed questions. 

‘How do you approach a second opinion?’ (28:47)

“You don’t have to feel bad” about seeking another opinion, says Grutzmacher. “It’s your right as a patient.” While clinicians are experts in medicine, “patients are the expert in their own experience.” Wanting a second opinion doesn’t make you a “difficult patient.” It’s about obtaining “all of the information you can get.”

It’s good to have another clinician give a patient a fresh look, adds Rosenberg, especially in complex situations, when facing surgery, or when your questions aren’t being adequately addressed. She would be wary, she says, of a physician or eye care provider who balks at their patient wanting a second opinion.

Do you have any advice to help with medication costs? (33:42)

To help with medication costs, many drug companies provide medication samples and offer assistance programs, says Young. These financial resources can often be found at the doctor’s office or on the drug manufacturer’s website. 

Is there anything you wish you’d known when first diagnosed with glaucoma? (34:27)

Glaucoma patient Caroline Wolfe recommends speaking openly with your doctor,

relating all of your concerns, and periodically asking about new treatment options. She says she’s also rented the iCare at-home tonometer several times to keep track of her eye pressure between doctor visits, which has given her peace of mind.

“A diagnosis of glaucoma is not a death sentence,” concludes Lear. In fact, he views it as a unique blessing. If he’d known about the impact he would have on others’ lives 20 years ago, he says, he may have been more compliant and “certainly more positive” along his journey.

*Glaucoma Research Foundation. (2022, August 16). How to be Your Own Advocate – Panel Discussion [Video file]. Retrieved from https://www.youtube.com/watch?v=gW5tqn5nayU