TFOS recently spoke with Rebecca Petris, founder and CEO of The Dry Eye Company, about how we can raise the bar in dry eye care. She shared her personal history and how it compelled her to enter the foray of eye health and more specifically, dry eye. In addition, her perspective regarding how to raise the bar in dry eye care is of fundamental utility for both patients and practitioners alike.
TFOS: How can we raise the bar in dry eye care?
RP: What is known about dry eye has been increasing very rapidly in recent years, which is very exciting, and the standard of care is slowly but noticeably improving. We’re seeing diagnostic approaches and treatments that no one was talking about ten years ago now in common use in cornea specialists practices. However, non-specialist eye care practices (both OD and eye MDs) – and ultimately their patients – to a large extent are barely starting to benefit from this trend. Far too many patients are not getting the information, diagnosis, treatment and support that they need until they’ve visited multiple doctors as well as done their own research. Five ways in which we can raise the bar are as follows:
#1 Improving diagnostic approaches and communicating diagnoses more effectively to patients: Eye doctors across the board routinely omit to undertake detailed diagnosis and/or fail to communicate their diagnosis to patients. It is common for ECPs to tell their patients nothing more that they have dry eye whereas I tell patients this is equivalent to a cardiologist telling them they have heart trouble. But dry eye is a catchall term that, absent further specifics, is uninformative, unhelpful and even misleading when it comes to treatment selection. I routinely coach patients on what questions to ask their doctors so that they can better understand what is happening and what kind of treatments will help them. I firmly believe patients will be more compliant if they are better informed.
Dry eye is a symptom disease and many patients won’t want to continue a treatment that doesn’t make them feel better unless they understand something of the rationale behind it. Furthermore, treatment theoretically follows diagnosis, but in common dry eye practice this just isn’t the case. Patients too often get doled out the same rote treatments (Rx and OTC) with no regard for differential diagnosis.
So I ask what is the REAL problem? Is it true aqueous deficient dry eye (relatively uncommon) from autoimmune disease, where much of the day-to-day focus may need to be on tear preservation and supplementation? Is it meibomian gland dysfunction, where newer treatments to improve lipid secretions abound (as opposed to the antiquated baby shampoo and hot washcloths)? Is it poor eyelid closure? Or is it even recurrent corneal erosions, which is a totally different animal but in my opinion often misdiagnosed as dry eye? There are many options. There is often more than one thing going on, but doctors need to know what all they are looking for, patients need to be told, and the treatments need to follow diagnosis.
Everyday ECPs and many corneal specialists too could benefit greatly from compact educational materials that address fundamental facts of ocular surface disease diagnosis. I am anxiously looking forward to the summaries from TFOS DEWS II and how those will get disseminated amongst eye doctors.
#2 Understanding and embracing the need for symptom management:
Dry eye patient behavior and treatment compliance are driven almost entirely by symptoms, not test results. Medical treatments may, or may not, have any immediate impact on symptoms, whether or now they are improving clinical signs. As a result, patients with moderate to severe symptoms rely greatly on management strategies that include non medical apparatus such as tapes, shields, goggles, compresses, dry eye glasses, humidifiers, etc. as well as modifications to home, workplace and lifestyle. These things make it possible for them to continue driving, using a computer, sleeping through the night and so on.
ECPs often do not have the knowledge or appreciation of the vital role these things play in alleviating the life impact of dry eye nor of how motivated patients with advanced symptoms are to do whatever it takes to feel better and become more functional. Hence one of my greatest frustrations over the years has been when patients have found something helpful and come back to me asking me “Why didn’t my doctor tell me about this?” Doctors either don’t understand how important these things are or just don’t see it as their job to give patients this kind of information. This is changing, for sure, but slowly.
So the approach I’ve found most successful over the years has been to coach patients on how to differentiate between management/palliative tools and medical treatments; to inform their doctor of everything they’re using or doing for their eyes; but not to expect their doctor to proactively help with the non medical things. How much better would it be though if the doctors got involved, were educated on the options and gave patients guidance? Patients could get their symptoms down to a manageable level sooner and more safely and would not be nearly so vulnerable to marketing pitches for questionable or quack treatments.
#3. Understanding the impact of pain and depression:
These are both huge topics that tend to be quite poorly understood by ECPs, yet both pose huge impediments to patients efficiently getting on a path to improvement of their disease.
As such, I am thankful that both subjects are starting to get some press.
On pain: We don’t really have appropriate language to describe the sensations of dry eye – most of the ones we use (dryness, foreign body sensation, etc.) really don’t sound that awful. Pain, though – and I use that term broadly for a variety of sensations that when chronic seriously interfere with one’s daily functionality and quality of life – is a big deal for people with moderate to severe dry eye. When I want to convey to someone what dry eye can feel like, I suggest they attempt to hold their eyes open for 30 seconds or longer. They figure it out really fast and are usually horrified at the idea that someone might feel like that all day long. I am so thankful that there is so much new research on corneal pain and that the professionals are starting to have real conversations about it. It would be helpful if more eye doctors were willing to refer patients to specialists who know more about pain.
Depression, of course, is very well known in the medical world as a feature of chronic pain in general. But ECPs seem to have special difficulty in relating to the depressed dry eye patient in pain. It’s terribly unfortunate because a depressed patient often cannot communicate their needs effectively, and when this is met by too great a lack of understanding on the medical practitioner’s side, the results are not good at all for the patient. I would love to see more education take place about the very simple explanations why dry eye patients are depressed and what simple steps can be taken – or avoided – to serve them better.
#4. Exploring advanced treatment modalities for people with severe signs and/or symptoms: This has improved among corneal specialists in recent years, especially with certain treatments such as autologous serum becoming much better known. But again, in ‘garden variety’ optometric and ophthalmology practices, the treatments never seem to reach beyond lubricants, steroids, Restasis, maybe plugs, maybe Lipiflow. Yet there is so very much more not just available but with well documented safety and effectiveness. One of the most frequent types of callers I get are those who say “I’ve tried everything!” and 99% of the time, what they mean by that is they’ve tried every artificial tear in the drugstore, plus Restasis and plugs. I get calls from people who have crippling symptoms and are about to quit their job or go on disability, or others who are, say, scheduled for a tarsorrhaphy due to severe chronic exposure keratitis, yet who never even been told about PROSE. Similarly, people with an MGD diagnosis who have never heard of options further than baby shampoo and warm washcloths, are desperate for options.
We really do have a plethora of good treatments available today but what’s missing is to put them within the reach of the patients who need them the most, and this means somehow making sure their doctors know about them. I am anxiously looking forward to how TFOS DEWS II can make its way into these practices.
#5. Helping patients orient themselves:
Informed patients are empowered patients who can communicate more effectively with their doctors and make good choices about their care! I really, really want to see solid science-based yet practical, accessible, and compact patient literature on all the most key practical dry eye topics – readily available through their eye doctors and online… it’s top on my list of projects for 2017. The need is huge. This again is one of the reasons I’m looking forward to the new TFOS DEWS II report, as a single reliable source to cite for all the fundamental facts patients need access to if they are to advocate for themselves and partner effectively with their doctors.
TFOS: How did you get involved in dry eye:
RP: After long prompting from my optometrist, I had LASIK eye surgery in San Francisco, July 2001. While I didn’t have any visible complications during or after surgery, my vision was damaged in several completely unexpected ways: I had dry eye and I had near-constant pain, burning and light sensitivity. At first, I thought these symptoms were temporary, but I eventually found it was there to stay and no one seemed to have any effective treatments to offer. As I researched for solutions, I found many people were in a similar predicament, most of whom, as myself, had also been to excellent surgeons. It was very troubling to me that so many people appeared to have been abandoned by the very physicians whose procedures had caused them such harm.
That’s how I got involved in patient advocacy, initially just lending a hand here and there where I saw need and then starting a website, forum and nonprofit organization for people with complications from laser vision correction. At this point I was living in the UK. Many of us had vision problems, but it quickly became evident that persistent dry eye and pain were the greatest problems for the most people. Furthermore, as I collected more and more practical information about dry eye, the site was attracting many people who had dry eye from completely unrelated causes.
So in 2005 I started The Dry Eye Zone, an information center about dry eye coupled with a set of community forums for personal support and sharing of information about diagnosis, treatment, management, and coping strategies. Since then, I’ve also published newsletters and blogs on dry eye. At about the same time I started The Dry Eye Company (& the Dry Eye Shop), initially as a “rescue” project for some eye-drops that had gone off the market. Soon after, it turned into a home for a variety of little known consumer, optical and pharmaceutical products from dry eye as well as specialty products for people who use PROSE or scleral lenses. In fact, I consider the shop to be just as much an educational tool as the Dry Eye Zone since we field tons of calls from people who are feeling alone and frustrated; I find myself doing a lot of coaching, including helping people navigate relationships with doctors, understand their diagnostic needs and their treatment options, and develop practical day-to-day coping strategies. My passion is education, whilst supporting people who need information and guidance on how to more effectively self-advocate.
TFOS Staff Writer