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First OD chairman for Sjögren’s foundation discusses its future
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April marks Sjögren’s Awareness month. Steve Cohen, OD, is the Sjögren’s Syndrome Foundation’s Chairman of the Board and the first optometrist to hold the position.
We asked Cohen about his leadership and the future of the foundation.
In 2012, the average amount of time to diagnosis was more than 5 years. Today that has decreased to 3 years, according to the foundation.
Healio: Dr. Cohen, congratulations on being the Sjögren’s Syndrome Foundation’s (SFF’s) first optometrist chairman. What does this mean for the eye care industry and Sjögren’s?
Cohen: I am proud to have this opportunity to be in a leadership position with the Sjögren’s Syndrome Foundation. Sjögren’s is a systemic autoimmune disease that affects the entire body. Over 4 million Americans have Sjögren’s, with an estimated 2.5 million patients currently undiagnosed. Although rheumatologists have primary responsibility for managing Sjögren’s, optometrists, along with ophthalmologists, dentists, neurologists and other health care specialists can play a vital role in the diagnosis and subsequent care of patients diagnosed with this devastating disease.
Today there is no cure for Sjögren’s; however, both prescription and over-the-counter treatments may improve various symptoms and prevent complications. The SSF strives to foster innovative research with novel approaches that will have the greatest potential impact on Sjögren’s patients, to ensure new therapeutics are developed and a cure found. Industry can provide further assistance by supporting research to develop new therapeutics that will treat the entire disease, not just one symptom.
Healio: How can optometrists help support the mission at SSF?
Cohen: Early diagnosis and proper treatment is critical for preventing serious complications and may greatly improve the quality of life for individuals living with Sjögren’s. Unfortunately, reaching a diagnosis can often be difficult.
In 2012, research of newly diagnosed Sjögren’s patients showed that it took an average of over 5 years for them to receive an accurate diagnosis. That year, the foundation launched an ambitious 5-Year breakthrough goal to shorten the time to diagnose Sjögren’s by 50% for patients diagnosed in 2017. Today, it takes an average of 3 years to receive a Sjögren’s diagnosis. We are still working to reduce that time frame.
Sjögren’s is often undiagnosed or misdiagnosed because disease symptoms frequently overlap with or “mimic” those of menopause, allergies or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia and chronic fatigue syndrome. Health care providers sometimes treat each symptom individually and do not recognize that a systemic disease is present, because all disease symptoms are not always present at the same time and because Sjögren’s can involve several body systems. Currently, there is no single test to confirm a diagnosis.
Dry eyes are among the earliest, most common symptoms of Sjögren’s. Optometrists can help to identify when a patient with dry eye disease is actually dealing with an overlying systemic disorder. For example, a patient with dry eyes who also experiences dry mouth and frequent dental complications, as well as joint pain and fatigue could fit the profile of a Sjögren’s patient. Optometrists can then make an appropriate referral (typically to a rheumatologist), which could help hasten that diagnosis.
Healio: How would you like to see the role of the eye care professional (ECP) in awareness, diagnosis and treatment improve?
Cohen: An integral part of achieving SSF’s goal of increasing awareness also involves ensuring a comprehensive understanding of Sjögren’s by health care professionals. The SSF works closely with health care providers to ensure quality and consistency of care for the assessment and management of patients with Sjögren’s. In 2016, the foundation, with the assistance of hundreds of eye care professionals, developed and published the first U.S. Clinical Guidelines for Ocular Management in Sjögren’s Patients, which helps to standardize patient care by giving ECPs a roadmap of how to treat and manage Sjögren's patients. These guidelines may be downloaded at www.sjogrens.org/files/research/OcularCPG.pdf. I think it’s important that ECPs become familiar with these guidelines.
Sjögren’s disease is progressive, and the consequences of a delaying diagnosis and treatment can be catastrophic. When an ECP works with a patient with dry eye disease, asking just a few questions and knowing more about Sjögren’s could help to get that patient diagnosed and treated sooner and more effectively.
Healio: What is SSF planning for Sjögren’s Awareness Month?
Cohen: Each day during Sjögren’s Awareness Month, the SSF will be using one or more of its social media channels to educate consumers, health care professionals and others by providing facts about the disease, offering resources and sharing stories of those with Sjögren’s to help others visualize and better understand what it is like to suffer from Sjögren’s. We encourage eye care professionals to help us spread the word by following us on Twitter (@SjogrensOrg), Facebook (@SjogrensSyndromeFoundation) and LinkedIn (Sjögren’s Syndrome Foundation), and sharing and commenting on selected posts issued from these channels, using our #ThisisSjogrens hashtag. – interviewed by Abigail Sutton