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National Glaucoma Research Foundation Survey Reveals Glaucoma Patients’ Experiences and Concerns During COVID-19 Pandemic

Findings from survey of more than 1,000 Americans suggest one-third lacked confidence that their disease was well-managed during early phase of lockdowns.

SAN FRANCISCO, July 14, 2020 – Glaucoma Research Foundation (GRF), a national non-profit organization dedicated to finding a cure for glaucoma, announced results from a survey designed to explore glaucoma patients’ experiences and concerns during the COVID-19 pandemic-related shutdowns. The survey, conducted among patients in the GRF database and supported by Aerie Pharmaceuticals, is intended to help inform care as the response to COVID-19 continues to evolve and eye care offices adapt to new patient-care requirements.

A total of 1,051 adult glaucoma patients from 49 states responded to the online National COVID-19 Glaucoma Impact Survey over four days in May 2020. Findings suggest that about one-third of glaucoma patients were not confident that their disease was well-managed during the initial months of the pandemic (36 percent “somewhat confident” or “not confident”). Confidence level was not associated with patients’ age, gender or geography, but was most significantly affected by appointment status.

Overall, more than half of the patients (53 percent) surveyed said they had to delay and/or cancel a glaucoma appointment during the first months of the pandemic. Patients who had the lowest levels of confidence regarding their glaucoma management were 30 percent more likely to have had an eye care appointment delayed and/or cancelled as compared to patients with higher levels of confidence.

“Glaucoma patients and their eye care professionals have faced particular challenges during the COVID-19 pandemic closures, given the progressive but indolent nature of a disease that can lead to blindness and the fact that tests required to monitor eye pressure or detect disease progression must be performed in person,” said Thomas Brunner, GRF president and CEO. “We hope the findings from this survey provide valuable perspective to eye care professionals regarding their patients’ preferences, concerns and experiences as they are able to re-open their offices and begin advancing glaucoma care.”

In addition to patients’ confidence in their disease management during the pandemic, the GRF survey assessed patients’ specific disease-management concerns, their experiences and comfort with telemedicine, how the pandemic impacted medication availability and adherence, and patients’ comfort returning to their eye care professionals’ offices.

Key survey findings related to patients’ experiences during the pandemic include:

From among six potential concerns suggested in the survey, patients worried most about:

  • Vision getting worse/losing vision (13 percent “very worried” or “extremely worried”)
  • Not being able to have an appointment with an eye doctor in person (12 percent “very worried” or “extremely worried”)
  • Not being able to have a quality appointment with an eye doctor due to social distancing and face masks (12 percent “very worried” or “extremely worried”)
  • Not having good control of intraocular pressure (10 percent “very worried” or “extremely worried”)

Telemedicine was not widely offered or embraced during the first seven weeks of the pandemic lockdowns (i.e., mid-March to early May). Among the 1,051 patients surveyed, just 4 percent were offered telemedicine visits, and fewer than 3 percent accepted. This may be a result of patients’ strong preference for in-person office visits, as well as a lack of technology – either for patients to participate in virtual visits or for physicians to perform specific eye care tests remotely.

  • Sixty-eight percent of patients say that once offices re-open, they prefer to be seen in person. Just 4 percent prefer a telemedicine visit. The remaining 28 percent said they will only be seen via telemedicine if their eye doctor asks them to consider it.
  • Given a choice between waiting six weeks for an in-person appointment and being seen via telemedicine in two weeks, 87 percent of survey participants preferred to wait for an in-person visit.

Respondents’ access to glaucoma medication and adherence to their treatment regimen did not appear to be impacted during this period. Patients maintained their supply of medication by refilling prescriptions early and/or receiving longer prescriptions (e.g., 90-day supply), and did not report rationing.

“A percentage of patients clearly struggled with the inability to see their eye care professional during the lockdowns, but it is reassuring to know that many of our patients were not overly worried about vision loss during this period and nearly all were able to adhere to their treatment regimens,” said Andrew Iwach, MD, GRF board chair and executive director, Glaucoma Center of San Francisco. “It’s also helpful to have patients’ input regarding the measures we can put in place to maintain or increase their confidence and comfort as we return to more in-person visits. Eye care professionals are making significant changes to keep patients and staff safe, but the survey findings help us understand what may help them feel safe too.”

Nearly two-thirds of patients who responded to the GRF survey said they are comfortable returning to their eye doctors’ offices (63 percent “somewhat comfortable” or “extremely comfortable”), assuming certain precautions are in place – most importantly face masks and less crowded waiting rooms. Survey respondents are comfortable waiting an average of five weeks after offices re-open to see their physician in person.

“We are grateful for the opportunity to help GRF and eye care professionals understand how the COVID-19 pandemic has impacted glaucoma patients in this country and how best to serve them as they begin returning to our offices,” said Richard Lewis, M.D., chief medical officer, Aerie Pharmaceuticals, and a practicing glaucoma specialist. “Our support for this survey is part of Aerie’s ongoing commitment to nurturing the physician-patient relationship, which is central to enhancing glaucoma care.”

About the National COVID-19 Glaucoma Impact Survey

Glaucoma Research Foundation (GRF), with support from Aerie Pharmaceuticals, commissioned a national survey of glaucoma patients to assess experiences and concerns during the COVID-19 pandemic. Outcomes Insights conducted the survey on behalf of GRF between May 7 and May 11, 2020, and a total of 1,051 glaucoma patients completed it. All survey participants were age 18 or older.

About Glaucoma

Glaucoma is the second leading cause of blindness in the world, and vision loss from glaucoma is irreversible. Currently there is no cure, and everyone is at risk for developing this blinding disease. It is estimated that by 2040, 111 million people worldwide will have glaucoma.

About Glaucoma Research Foundation

Glaucoma Research Foundation (GRF) is a national non-profit organization dedicated to finding a cure for glaucoma. For more than 40 years, Glaucoma Research Foundation has worked to advance sight-saving research and provide essential educational resources for patients. It funds critical research into glaucoma treatment, vision restoration, and a cure for glaucoma. It is also the leading source of information for glaucoma patients and their families.

The National COVID-19 Glaucoma Impact Survey was supported by Aerie Pharmaceuticals.


First posted on July 14, 2020; Reviewed on May 18, 2022