Exploring the world of patient education outside the exam room

It is my pleasure to introduce you to the first issue of Corneal Physician, a non–peer-reviewed publication that provides the latest cornea advancements, news, research, products, and controversies in our field. I hope you find it brings all of us closer as colleagues and friends working together to do our best to provide the very best care for our patients by sharing our insights and experiences. I hope that as you read this first edition, you will provide feedback to develop Corneal Physician into a tool that will be helpful in your practice. Please email managing editor Jennifer Kirby (Jennifer.kirby@pentavisionmedia.com) with any comments, ideas or topics for future development of the publication. In regard to a topic we are all too familiar with, I’d like to share a personal story of a patient suffering from incapacitating dry eye.

A 62-year-old highly myopic woman was under my care for dry eye disease for over a decade. She eventually underwent successful cataract surgery, with excellent uncorrected distance vision of 20/20 OD and 20/20-2 OS, although she said she felt her dry eye disease decompensated after her uneventful cataract surgery. Specifically, she relayed an inability to keep her eyes open due to constant dry eye disease-caused foreign body sensation, despite instilling preservative-free artificial tears every 10 minutes throughout the day, along with a prescription drop and serum tears.

Prior to her cataract surgery, she had suffered from depression and had been hospitalized for treatment on several occasions over the prior 10 years. The patient and her husband eventually divulged that she had become addicted to online dry eye disease chat groups, and she began the first of four in-patient psychiatric hospitalization stays for depression and suicidal ideations related to dry eye disease. Her husband would catch her online in the middle of the night; night after night, blogging about her condition. After her fourth inpatient stay, she had arranged to see me the next morning to discuss her future treatment plan. About an hour after her appointment time, her husband notified me she had taken her own life by overdose that morning.

Two weeks later, he showed up at my office with a garbage bag of eyedrops and her suicide note, saying she could no longer cope with the constant drops and preoccupation with her eye condition (despite 20/20 uncorrected vision). The “preoccupation with her eye condition” made me wonder whether her death had anything to do with her fixation on dry eye disease chat groups, so I decided to explore them further.

As opposed to industry-initiated web sites and ophthalmology organization web sites, such as the AAO, patient-initiated posts and blogs are rife with varied personal opinions that are often not supported by any science (or even accuracy), omitting important details, such as pre-existing conditions (e.g. contact lens intolerance). They can be cathartic for those dealing with dry eye disease, but they can also have a negative effect on mental health: in fact, an emotional connection to social media use is linked with negative health outcomes.¹

Blogs and chat groups may be helpful when considered in context, however they may be dangerous and addictive to those with chronic disease (such as severe dry eye) and exacerbate dependency issues in a time of desperation. As a result, as doctors, I think we should educate these, among other, patients who have ocular surface disease, that these internet sites can compromise one’s mental health. Additionally, I think we should advise patients of (or help create and support) more helpful, non-inflammatory sources of information online, such as the Sjogren’s Syndrome Foundation web site, which offers a variety of patient resources and information without the emotional charge associated with some blogs and chat groups. CP.

References

1. Bekalu MA, McCloud RF, Viswanath K. Association of social media use with social well-being, positive mental health, and self-rated health: disentangling routine use from emotional connection to use. Health Educ Behav. 2019;46(2_suppl):69-80.

Dr. DONALDSON is a professor of clinical ophthalmology at Bascom Palmer Eye Institute, University of Miami Miller School of Medicine, and medical director at Bascom Palmer Eye Institute of Plantation in Florida. She discloses relationships with Alcon, Allergan, Avellino, Bausch + Lomb, Biotissue/TissueTech, Carl Zeiss Meditec, Eyevance, Kala Pharmaceuticals, Lumenis, Omeros and Sun Pharmaceutical. Reach her at KDonaldson@med.miami.edu.