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Why is glaucoma still the second leading cause of blindness in the United States? Dr. Paul Lee at the Duke University Eye Center completed a GRF-funded study that attempts to answer that question.
Things are looking up for people with glaucoma. Surgeries have been improved. Research forges on in new and exciting directions. Our Normal Tension Glaucoma (NTG) Study proved that lowering eye pressure has a positive effect on saving sight. Treatments are more effective. We now even have drugs with fewer side effects. In fact, glaucoma can now be thought of as one of those diseases we call "manageable."
So why is glaucoma still the second leading cause of blindness in the United States? Dr. Paul Lee, at the Duke University Eye Center, completed a GRF-funded study in 2000 that asks that question. Unfortunately, we found, there are no easy answers.
What may be most important is improving our communication: communication between people with glaucoma and their doctors as well as their families, and between glaucoma specialists and other eye care professionals. Being human, with all our human complexities, we must acknowledge and meet these challenges in an environment of change.
Results from Dr. Lee’s study were gleaned from 15 individual interviews and 25 focus groups, conducted in 3 different regions of the country: Los Angeles, Minnesota, and North Carolina. Findings fell into four main categories:
Eye care professionals vary in their training and experience with glaucoma. Glaucoma diagnosis and treatment require special attention and knowledge. For example, eye pressure needs to be targeted to each individual.
Even eye care providers with a great deal of glaucoma experience admit that detecting changes in the optic nerve is a challenge. The optic nerve needs to be regularly examined and documented. For eye care providers to remain current in glaucoma and treat glaucoma aggressively, new methods, when indicated, need to be made readily available.
Now add the patient into the mix. How human beings interact is complex. The patient’s level of trust and compliance with eye care professionals vary. Obstacles to frequent check-ups exist. Not all patients tell their doctors everything relevant to their care. For example, patients and doctors each may have discomfort discussing alternative treatments. As a result, neither feels they have the full picture.
The patient needs treatment. The doctor needs to educate the patient. And it all takes place within our current healthcare structure.
Patient education is a point on which everyone agrees. We all know it’s needed. The question is, How do we define patient education? And what are the best ways to do it?
In communication, one size does not fit all. For example, men and women communicate differently. We all have different learning styles. Some of us learn best with visual input. We understand better when we’re shown.
Some find reading about a topic the best way to learn. Still others prefer the old classroom style where a teacher presents the information. There are almost as many ways of learning and/or teaching as there are people. All this takes time, and time is a rare commodity in healthcare today.
HMOs and managed care have changed the way healthcare is delivered. One of the unfortunate byproducts of managed care is that doctors no longer have the luxury of time. Teaching, learning, gaining trust, and building rapport all take time. Time is not as available as it used to be.
A possible solution might be a mechanism that first establishes a patient’s individual needs. What is the best way to get the information across? Perhaps it is a tool to help the patient and the doctor talk to each other. It might be something like a screening device that would tell the doctor and his/her staff important information about the patient: how much they already know, how much they want or need to know.
Continuity of care is also a concern. Patients move and insurance plans change. The patient then has to reestablish a relationship with a new doctor. The new doctor may have difficulty tracking the patient’s progress.
We also found that family and friends are not really involved in their family member’s care. They’re not getting involved with treatments, going to appointments, or educating themselves about the disease. Because there are no glaring outward signs of glaucoma, sometimes family and friends aren’t convinced of its seriousness.
People with chronic disease benefit from support. This is why support groups are so important. Our Glaucoma Support Network (GSN) and the glaucoma support groups mentioned in this edition of Gleams can help. Families may also benefit from this support.
Dr. Lee’s study tells us a lot. The problem is, it’s only part of the story. His work uncovered findings we will most certainly want to explore further. However, that’s the nature of research: answers often turn up more questions.
Looking at why people are still going blind, Dr. Lee explored some interesting facts about people: how they interact, how they learn, what makes them comfortable or uncomfortable, how well they express themselves, and how they respond to stress.
There are many variables among human beings that affect the outcomes of their interactions. Both doctors and patients are human beings. It’s like a human puzzle: how well the variables fit together determines what the final picture will look like.
The healthcare system can be seen as the frame around the picture. All these pieces must come together within our present healthcare system. The frame must not only support but enhance the picture.
Dr. Lee’s study gives us insight into the pieces of the puzzle and its frame. However, it’s only the tip of the iceberg. Now we need to put them together so they not only fit but work well together. When we’ve done that, we may not need to ask, Why are people still going blind from glaucoma?
Last reviewed on March 03, 2011