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We’re pleased to learn that after five years, PROSE lenses, a type of scleral lens fitted at Boston Foundation for Sight, are still helping about ¾ of the people who have them and who suffer with Dry Eye.

And we’re not surprised at the results of the review in which researchers confirmed that:

73.6% of patients were wearing the devices at five years. Patients with a distorted corneal surface were more likely to continue using the PROSE device than were those with ocular surface disease (84% vs. 64%, p=0.0121).

Ocular surface disease, a term sometimes used in place of Dry Eye, can manifest in many ways. About 80% of the time it is due to meibomian gland dysfunction (MGD). That’s why treating the meibomian glands, with probing or other interventions, is so important in the treatment of Dry Eye. This may also be why some people abandon scleral lenses, because the lenses aren’t treating an underlying condition that can cause extreme discomfort. Wearing the lens can even exacerbate discomfort in these cases.

Microbiome of Contact Lens Wearers Studied

Still 74% is significant. Though some of those patients may have other co-morbidities that still need to be treated e.g. the often missed conjunctivochalasis or SLK. For patients with these co-morbidities, scleral lenses may indeed provide relief from pain and discomfort (as long as they can tolerate something in their eyes) but without addressing the underlying cause of their pain.

Even though some patients are able to resume normal activities after being fitted with scleral lenses, a recent study discovered that the microbiomes of the eyes of contact lens wearers differ from the microbiomes of the eyes of those who don’t wear contact lenses. And an altered microbiome may increase the risk of eye infections in contact lens wearers. So to prevent infections, scleral lens wearers should practice good contact lens hygiene.

References

Changes in the eye microbiota associated with contact lens wearing
Shin H, Price K, Albert L, Dodick J, Park L, Dominguez-Bello MG.
MBio
2016 Mar 22;7(2). pii: e00198-16. doi: 10.1128/mBio.00198-16.
View the full report

Prosthetic replacement of the ocular surface ecosystem: impact at 5 years
J.S. Agranat, N.R. Kitos, D.S. Jacobs
British Journal of Ophthalmology
doi:10.1136/bjophthalmol-2015-307483
View the full report

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We came across this story today:

New research reveals an alarming, self-acknowledged gap in family doctors’ skills when it comes to diagnosing and treating patient’s eye conditions.

The Vision of Britain report, commissioned by Optegra Eye Health Care, shows that more than three in 10 GPs (32 per cent) say they feel ‘de-skilled’ in diagnosing eye conditions, reflecting the immense pressures and workload on these doctors.

And 44 per cent of GPs say that they feel less confident in dealing with eye conditions than any other part of the body.

Yet more than a quarter of British adults (26 per cent) turn to their GP, rather than an optician, for help if they have an eye problem.

Two in five GPs (40 per cent) surveyed for Vision of Britain state they need more, or refresher, training on all eye conditions.

Dr. Sarah Jarvis, GP and medical broadcaster, says: “As a doctor, I’m only too aware of how little in-depth training I had in dealing with everyday eye problems like dry eye and short-sight. Yet they affect so many patients. It is vital that GPs on the frontline have ongoing support in diagnosing their patients accurately and confidently so they can be put on the right treatment path.

That’s great. Let’s hope the UK’s general practitioners are open to receiving training that covers the entire spectrum of Dry Eye diagnosis and treatment, from mild to severe and everything in between. And then let’s hope that training is expanded to eye doctors.

Reference

New report reveals UK GPs lack confidence in diagnosing eye conditions
Adapted Media Release
Medical News Today
January 4, 2016
View the full report

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Value-based care, a new buzzword describing mechanisms to reduce the costs of healthcare, is something many of us are already all too familiar with.

Consider this hypothetical cost-cutting scenario described by a health policy expert:

If a patient says he would like an MRI performed, the physician can refer to the list of recommendations and explain that there is insufficient evidence to suggest an MRI is necessary at this time. The physician may then suggest lower-tech interventions such as physical therapy or over-the-counter pain relievers.

In our opinion, the policy expert has fundamentally missed the point. The patient asking for an MRI isn’t asking for intervention. The patient is asking for a diagnosis. Neither physical therapy nor pain relievers are a diagnosis.

Are doctors really going to be willing to take this “value-based” approach?

Sadly, for many Dry Eye patients, this fundamental first step, the right diagnosis for Dry Eye symptoms, is often skipped.

The Right Diagnosis for Dry Eye Symptoms

We don’t know why exactly but suspect that it may be due to the fact that many (most?) ophthalmologists are following the “preferred practice pattern” guidelines promoted by their accrediting body, the American Academy of Ophthalmology. Unfortunately for these doctors and for us, the guideline is outdated, reducing the likelihood that we’ll be diagnosed properly. And then we’re all given the same standard treatments appropriate perhaps for only mild cases (lubricating drops, warm compresses, lid wipes) and Restasis.
But if we don’t respond to these standard treatments, our symptoms are labeled phantom, psychosomatic, secondary to depression, or neurological in nature.

Instead, doctors should examine each of us thoroughly as individuals, not as populations, and then address each diagnosed co-morbidity with targeted treatments, the way some doctors do.

That would be real value-based care, care based on a specific patient’s needs, starting with a right diagnosis.

Reference

An ethical basis for moving from volume to value
E. L. May
Healthcare Executive
2015 Jan-Feb;31(1):28

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One of the reasons we started the Not A Dry Eye Foundation was the frustration we felt when confronted by physicians who dismissed our symptoms as being “something we would learn to live with” or “all in our heads.” Not only were we mystified by their (lack of) diagnosis and conclusions, but we were terrified at the prospect of having to live with unbearable eye pain for the rest of our lives, and this without anyone telling us the causes of Dry Eye pain.

When we eventually learned about the ways the disease can quickly escalate and the way it can alter the tissue, secretions, and functioning of various eye structures, we felt vindicated. We knew all along that nothing that we were experiencing was psychological, neurological, or psychosomatic in nature. It was physical – blocked meibomian glands, inadequate aqueous tears, wrinkled conjunctiva, bacteria, twisted lashes, demodex mites, allergies, and more.

Learn about the causes of Dry Eye pain

And there was a lot that could be done about each of these conditions so we wouldn’t have to learn how to live in extreme, debilitating, and unbearable pain for the rest of our lives. There was probing for obstructed meibomian glands, punctal cautery for aqueous deficiency, surgery for the wrinkled conjunctiva, antibiotics for infections, epilation for misdirected lashes, and any number of medications or other treatments for anything and everything else.

But with all of these possible diseases taking hold in the eyes at the same time, is it no wonder that we felt pain? If a single eye lash can stop us cold, why wouldn’t a host of diseases cause unbearable pain in the most sensitive part of the body?

Dubious Causes of Dry Eye Pain

And so we became frustrated once again when we learned that physicians at a prominent teaching hospital and a VA hospital concluded that “neuropathic ocular pain due to Dry Eye is associated with multiple comorbid chronic pain syndromes.”

To us, this is like saying that when you have a diseased finger and are experiencing pain in that finger, the pain is due to some other chronic pain syndrome, not to the disease in your finger.

What?

We wonder if the authors will next conclude that the treatment should be Lyrica or some other anesthetizing pain medication? Or maybe serum tears? Or scleral lenses?

Maybe.

But we think there’s a much better approach.

It has to do first with correct and comprehensive diagnosis, the most important step in alleviating symptoms, and then targeted therapy for each co-morbidity — the approach taken by our doctor, Dr. Steven Maskin.

And so we conclude by citing a different study by some of the same physicians at the same teaching and VA hospitals who concluded that ocular pain associated with Dry Eye may be due to conjunctivochalasis, and that patients should be screened for the disease.

Now we’re getting somewhere. That’s the spirit. Happy New Year!

References

Neuropathic ocular pain due to dry eye is associated with multiple comorbid chronic pain syndromes
Galor A, Covington D, Levitt AE, McManus KT, Seiden B, Felix ER, Kalangara J, Feuer W, Patin DJ, Martin ER, Sarantopoulos KD, Levitt RC.
The journal of pain : official journal of the American Pain Society
2015 Nov 19. pii: S1526-5900(15)00944-X. doi: 10.1016/j.jpain.2015.10.019. [Epub ahead of print]
View the full report

The impact of conjunctivochalasis on dry eye symptoms and signs
Chhadva P, Alexander A, McClellan AL, McManus KT, Seiden B, Galor A.
Investigative Ophthalmology and Visual Science
2015 May 1;56(5):2867-71. doi: 10.1167/iovs.14-16337.
View the full report

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Other results of the Expert Opinion study were also indicative of the insufficient  Dry Eye treatment so many have received.

According to the study:

respondents reported wanting to prescribe cyclosporine A 0.05 % (52/79, 66 %), autologous serum eye drops (39/73, 53 %), resolvin E1 (omega 3 fatty acid) eye drops (31/72, 43 %), and 3 %  Diquafosol  (31/75, 41 %) more often.

Here again we see Restasis, which is effective for about 10% of patients, and serum tears rise to the top of the list.

Almost half were interested in prescribing resolvin E1, presumably due to its anti-inflammatory properties. But even resolvin E1 isn’t likely to address the underlying cause of inflammation.

Just over 30% wanted to prescribe diquafosol. A 2012 double blind study compared diquafosol 3% to sodium hyaluronate 0.1%.  The authors of that study reported that

the incidence of adverse events was 26.4% and 18.9% in the diquafosol and sodium hyaluronate groups, respectively, with no significant difference.

31% of the Expert Opinion participants said they wanted to prescribe diquafosol more often.

In the spirit of first do no harm wouldn’t it be better to first know who might suffer adverse events before prescribing diquafosol in order to prevent them from happening in the first place?

References

Expert opinion in the management of aqueous deficient Dry Eye Disease (DED)
A Sy; K. S. O’Brien; M. P. Liu; P. A. Cuddapah; N. R. Acharya; T. M. Lietman; J. Rose-Nussbaumer
BMC Ophthalmology
2015;15(133)
View the full report

A randomised, double-masked comparison study of diquafosol versus sodium hyaluronate ophthalmic solutions in Dry Eye patients
E. Takamura; K. Tsubota; H. Watanabe; Y. Ohashi
The British Journal of Ophthalmology
2012;96(10):1310-1315. doi: 10.1136/bjophthalmol-2011-301448
View the full report

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A recent study published on BioMed Central may explain why Dry Eye sufferers often receive treatments that are ineffective or inadequate.

For the study, authors surveyed ophthalmologists to “identify the most common treatments used among specialists” for Dry Eye.

Not surprisingly, one of the most commonly prescribed treatments for Dry Eye was topical cyclosporine A (CSA), the active ingredient in Restasis. According to the study, of the 104 specialists surveyed 71, or a full 68%, said they prescribe CSA.

The reliance on Restasis, a topical drop that benefits only about 10% of users, may alone explain why so many Dry Eye sufferers continue to complain of symptoms after starting treatment.

A clue to understanding why a medication that is effective only 10% of the time is among the most commonly prescribed treatments for Dry Eye lies in understanding the mechanisms of disease management in populations. For example, if a drug that benefits 10% of those who use it is given to 100 million people, 10 million might benefit from it. That’s a lot of people. And so Restasis now enjoys the number one position in commonly prescribed Dry Eye treatments despite its limited efficacy, while profits to the drug maker accrue.

Other Commonly Prescribed Treatments for Dry Eye

Next on the list is fluorometholone, a steroid marketed under many brand names that is most often prescribed after laser refractive surgery. Which then begs the question — is this result simply an indication of the frequency of laser refractive surgery, a common cause of both transient and chronic Dry Eye?

Loteprednol etabonate, brand name Lotemax, is another steroid. Although effective in treating inflammation, long-term steroid use is usually not recommended.

Surprisingly autologous serum tears made it to the number 4 slot, a ranking the authors suggest may be due to the number of responders from large university centers. Although serum tears too have limited efficacy, even if they were more effective, they are still virtually unavailable in most ophthalmology and optometry practices.

Lubricating drops universally prescribed for Dry Eye were excluded from the survey.

The authors suggest that this study will help to inform future studies.

We hope that these future studies will examine not only which treatments address symptoms and signs of Dry Eye but also the effectiveness of these treatments for specific co-morbidities e.g. obstructive meibomian gland dysfunction (o-MGD), non-Sjogren’s aqueous deficiency, or many others, rather than the less specific Dry Eye Syndrome or blepharitis.

To be continued….

Reference

Expert Opinion in the Management of Aqueous Deficient Dry Eye Disease (DED)
A. Sy; K. S. O’Brien; M. P. Liu; P. A. Cuddapah; N. R. Acharya; T. M. Lietman; J. Rose-Nussbaumer
BMC Ophthalmology
2015;15(133)
View the full report

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If you’re thinking about making a tax-deductible donation to a charity this holiday season, please consider donating to Not A Dry Eye Foundation.

Not A Dry Eye is dedicated to promoting awareness of Dry Eye Syndrome. One way we hope to do this is by improving understanding of the disease and the debilitating effects symptoms can have on a sufferer’s day to day life.

Please join us in the fight against Dry Eye Syndrome with your tax-deducitble donation.

And go to All About Dry Eye/Symptoms to learn how the disease can impact quality of life.

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Many of you have expressed interest in participating in our on-line, audio Patient Forums. We want to assure you that these will be launched soon. We are in the process of selecting a service provider — reviewing features, pricing, and support plans. As soon as we select a vendor, we will launch the first support group forum.

In the mean time, if you have any questions or suggestions about the Patient Forums or the technology that will be used, please feel free to contact us at contact@notadryeye.org

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After months of preparation, the Not A Dry Eye Foundation is proudly launching its website and proceeding with its mission — promoting awareness of Dry Eye Syndrome.

The website will help Dry Eye sufferers around the world better understand their symptoms and conditions, while providing doctors, and other health care providers, information about diagnosis and treatment options.

Too many Dry Eye sufferers see too many doctors before they find the help they need, and this is the underlying motivation behind the Not A Dry Eye Foundation. Each of us lived through this harrowing experience, vowing that one day we would help others like ourselves.

And with the launch of this website, we are fulfilling our promise. Because we don’t think it’s OK for doctors to say, “you’ll learn to live with it” or “at least you don’t have cancer” when they’re faced with a difficult Dry Eye case. There are many different options now that doctors, and their patients, need to know about, both for diagnosis and treatment. And they can learn about these here.

Promoting Awareness of Dry Eye Syndrome

We’re also pleased that the website is designed specifically for people who suffer from Dry Eye, many of whom, like us, find it painful or uncomfortable to read or look at a computer screen. Clicking the “Listen” button at the top of each page lets users listen to the words on that page instead of reading, giving eyes a well-needed break.

We invite you to visit our website and learn all about Dry Eye Syndrome. And we hope you will come back often to learn about upcoming events, like virtual support groups and Ask a Doctor webinars, all of which will be in audio, minimizing the time you will spend looking at a computer screen.

In our hearts we believe that:

With knowledge there is power.

With support there is courage.

With hope there is healing.

Please join us in our journey to healing.


The founding board members of the Not A Dry Eye Foundation.

The Not A Dry Eye Foundation is a patient-driven 501(c)3 non-profit organization dedicated to promoting awareness of Dry Eye Syndrome.