Numbers matter: Why and how to track your dry eye symptoms
Dry eye disease involves two parallel realities that can be hard to reconcile:
1) Our eye doctor's findings.
2) Our own experiences, i.e. how our eyes feel and how we see.
When these two things are too far apart, frustration is inevitable. Is there anyone who hasn't experienced that at some point in their dry eye journey? For some of you, perhaps it's been more the rule than the exception: where you're trying to express how uncomfortable you are and describe the impact of dry eye on your life, but it seems so far out of alignment with what your doctor thinks during the examination. The bottom line is that, so often, we just don't feel heard or understood.
It's the classic sign vs. symptom clash.
It doesn't have to be this way.
What if BOTH parties were equally equipped with ways to measure and communicate the relevant facts?
Doctors get to measure clinical signs of dry eye, e.g. tear break-up time, tear volume, tear film osmolarity, and so on. Measuring these regularly is helpful in many ways, from creating a treatment plan to evaluating progress along the way.
But patients also have important data that needs to be assessed and reported: symptoms, e.g. burning, foreign body sensation, blurred vision, pain, light sensitivity, itching and so on.
Did you know that our symptoms can and should be evaluated regularly, using scientifically validated surveys? This type of symptom data is critically important because it seeks to capture how your eyes actually feel and how they are affecting your vision function and even quality of life, but in a reliable and measurable way. (This type of data is used in FDA clinical trials of dry eye drugs, by the way, and medicine in general is, at last, slowly trending towards considering the patient's experience and priorities more.)
Imagine having numbers to give your doctor, as opposed to "My eyes are killing me!" "My eyes hurt so much at the end of the day." "This dry eye thing is running my life!" etc. No matter how true it all is, it may also just be too difficult for doctors to take on board, particularly if the severity of clinical measurements doesn't seem to explain what you're describing. Push come to shove, your subjective descriptions will be sidelined in favor of their objective numbers. So, be objective and get numbers. The right numbers speak for themselves, and they help you talk your eye doctor's language. I'm talking about symptom data collected methodically and scientifically.
Think about it. The FDA requires drug companies to show improvement to symptoms, not just clinical signs of dry eye, in order to approve dry eye drugs. Several things then stand to reason, including: (1) Reliable ways to measure symptoms really do exist, and (2) your doctor ought to find symptom data of that kind at least as interesting as the FDA does.
So: Get into the numbers game!
Some dry eye doctors ask their patients to complete a survey of their symptoms before each appointment. They might be using one of the well known and validated surveys, or they might be using something they created themselves which they feel works as well or better. Either way, that's great! Consider getting a copy, and complete it weekly or monthly in between appointments, not just at appointments. If your doctor does not use any type of survey to gather symptom data, take the initiative. Get a questionnaire (see below for a simple place to start), complete it and print it before every appointment, and ask your doctor to put it in your medical record. Complete it at regular intervals in between appointments as well. In addition to everything your doctor will learn, you may even find yourself surprised at the results. Patterns may emerge that you might not be aware of.
Where do I get a dry eye questionnaire?
For starters, try OSDI (Ocular Surface Disease Index (copyrighted by Allergan) It is far from perfect, for sure! However, I've tended to recommend this one because:
It's easy to find.
It's very well known and broadly accepted (including in clinical trials).
There's a smartphone app. (So far as I know, this is the only one of its kind, but if I'm wrong, please enlighten me!)
For those who care to dig further, TFOS DEWS II's Epidemiology Report (published July 2017) contains a review of all the dry eye patient questionnaires that have been used in studies, including 12 that have been validated.