The problem with chronic glaucoma
The problem with chronic glaucoma is that the disease causes no symptoms early on, but the treatments often do!
Glaucoma is a chronic disease which causes no symptoms at all in its early stages, but which can cause progressive loss of peripheral vision and ultimately blindness if left untreated.
With most medical conditions, you develop some symptoms, you come to see the doctor, we make a diagnosis, and offer you treatment which makes the symptoms go away (or at least gives you something to work with while Mother Nature and Father Time do their work).
With many chronic diseases, like glaucoma, as there are no symptoms in the early stages, they are only detected on routine screening, which is why it is so important for you to have regular eye health checks every year from the age of 40, and earlier if you have a family history of the disease.
Because there are no symptoms, there is little incentive for you to seek care, except for what you have learned through your family history, or your eye doctor, or through public health education regarding the risk of going blind from this disease.
The treatments that we have do not cure glaucoma, nor reverse any damage that has already been done. The best we can aim for is to reduce the deterioration in your optic nerve function and vision to the slow rate which normally happens with age.
So there is no positive outcome that you as a patient experience, and no incentive for you to continue to take the treatment, except for our assurance that it is needed to stop you from losing vision, and our reassurance that it is working and that your visual function is holding steady and your visual loss is not progressing.
Because chronic glaucoma causes no symptoms, you cannot tell yourself if the treatment is working or not, and so regular follow-up – including eye pressure measurement, optic nerve examination, visual field testing, and OCT of the optic nerves – is required to make sure we are maintaining your pressures at levels that are safe for you and not causing progressive nerve damage. These appointments and tests cost you and your carers time and money.
As with high blood pressure, we cannot 'cure' chronic glaucoma and sometimes your condition gets worse, either because of or in spite of our treatments.
You may develop side effects from the drops, or they may no longer be effective and we may need to add more drops, or you may need laser or even surgery to try and keep the pressures down, which may also have side effects. And even with all of this, the optic nerve damage and visual field loss may progress.
Small wonder then that one year after the diagnosis is made, only 40% of patients are still taking their drops regularly and there is a slow decline thereafter. And these numbers are even worse if the repeat prescriptions for drops are given by a GP rather than in conjunction with a visit to your eye specialist.
It can be hard to motivate yourself every day to do something that does you no apparent good, may cause harm, costs money and is at best an inconvenience.
There is no cure, no guarantee that the treatment will work, and increasing likelihood of side-effects from treatment, or of treatment failure as time goes on.
On top of this there is the fear that you may ‘fail’ the vision test, ‘fail’ the field test, be told you cannot drive any more, or that you may need surgery.
So how do we support you to continue with your treatments and follow-up appointments?
This is where clear communication and the importance of the doctor-patient relationship come in.
The reason we are doing all of this is so that you maintain good vision for the rest of your life or, to put it more bluntly, we don’t want you to go blind before you die.
These are your eyes, this is your disease. We did not give it to you, and we cannot make it go away, but we can support you to manage it. We cannot put the drops in for you, but we can educate you as to the great purpose of using them, when to use them, how to use them, and why to use them. We can help you to select the best drops for you, and to deal with any side effects, but we need you to let us know if you are experiencing side effects, so we can try another treatment if need be.
Your health is in your hands. We are partners in your health, we are here to inform you and support you, but we cannot do it for you.
We need to know if you are having trouble remembering the drops, trouble putting them in every day, trouble with side effects, trouble understanding why you need to use them.
We need to know if there are any barriers to you using the drops regularly and keeping your appointments with us.
We need to know if money is an issue and a barrier to you coming to see us. We need to know if language is a problem, or transport, or anything else is needed to support you in your understanding of glaucoma and your ability to use the treatment regularly.
We need you to be open and transparent and tell us the truth and we need to be truthful with you.
Glaucoma is a chronic, lifelong condition. It is an inconvenience for you, but it need be no more than that, if you work with us by putting your eye drops in correctly and as prescribed, keeping your regular follow-up appointments, and communicating clearly with us if anything is getting in the way of you doing any of this.
We really want you to be able to see for the rest of your life, and we are sure you do too.
Help us to help you manage your glaucoma and care for you as a whole person, and together, we can care for you and your eyesight for the rest of your life.
Glaucoma Australia https://www.glaucoma.org.au/ is a great resource for anyone who has glaucoma.