Survey: Glaucoma affects patients and caregivers daily
Posted: September 09, 2019 | Word Count: 762
Glaucoma is a serious eye disease that affects more than 3 million Americans. While many new glaucoma treatments have become available over the past several years, there is currently no cure for the disease, which can cause permanent vision loss and blindness if not properly controlled.
Glaucoma Research Foundation (GRF) is a national nonprofit organization dedicated to finding a cure for glaucoma. Recently, GRF commissioned a survey to better understand the impact of glaucoma on U.S. patients as well as their family and friends who serve as caregivers.
“Despite available treatments, education and other services, this survey confirmed that patients and their caregivers still struggle to manage the disease,” said Dr. Andrew Iwach, GRF board chair and executive director, Glaucoma Center of San Francisco. “Exploring current patient and caregiver experiences in this way will help us identify new ways to support them and protect their vision.”
Significant impact on daily lives and well-being
Findings from the GRF’s National Glaucoma Impact Survey, which was supported by Aerie Pharmaceuticals, show that glaucoma impacts many patients on a daily basis. The disease causes challenges related to treatment management, as well as emotional concerns such as anxiety, fear and even depression.
Key findings from the survey of 1,548 patients include:
- 64 percent say glaucoma impacts their lives daily. This impact is even greater among African American patients (72 percent).
- Patients are “very” or “extremely” concerned about losing their vision (76 percent), their ability to drive (65 percent), their ability to live independently (50 percent) and their ability to care for themselves (37 percent).
- Younger patients (those under age 65) are slightly more worried about glaucoma’s impact on daily living than their older counterparts. Younger patients also report feeling angrier and more depressed about their glaucoma than older patients.
In addition to the emotional impact of glaucoma, patients say that they are not satisfied with their prescription eye drops — the most commonly used glaucoma treatment — and have difficulty controlling their disease.
- 89 percent of glaucoma patients use eye drops.
- On average, patients take three drops per eye per day and virtually all survey participants report taking two to three types of prescription eye drops twice per day.
- 52 percent of these patients say they are “not at all,” “slightly” or only “moderately” satisfied with their drops.
- One-third of patients report that they miss an eye-drop dose at least two to three times per month.
- Most patients know their last intraocular pressure (IOP) measurement and their IOP goal (89 and 84 percent, respectively), but just 53 percent say they achieve and maintain it. Elevated IOP is the only glaucoma risk factor that can be changed (Coleman, et al. Open Ophthalmol J. 2009).
“It is alarming that only about half of patients are able to control their intraocular pressure,” said Thomas Brunner, GRF president and CEO. “We were encouraged, however, that 64 percent of patients say they are still determined to take control of their disease. While there is clearly still a need for improved treatment options, GRF can now use these findings across our programs to help make glaucoma more manageable and less burdensome for everyone.”
Caregivers also need more support
Family members and friends who provide care to glaucoma patients are also impacted by the disease daily.
Among the 60 caregivers who completed the survey:
- More than half (52 percent) say that caring for a patient with glaucoma impacts their lives “constantly” or “frequently.”
- 53 percent say it is “moderately,” “very” or “extremely” burdensome caring for a glaucoma patient.
- 75 percent say they would like more information about new glaucoma treatment options.
“We were pleased to support this important and timely survey,” said Dr. Richard Lewis, M.D., chief medical officer of Aerie Pharmaceuticals and a glaucoma specialist. “The findings strongly suggest that in addition to developing more effective glaucoma treatments, we must find ways to provide greater support to patients and caregivers.”
If you or someone you love has glaucoma:
* See your eye doctor every six months, or as directed.
* Call your eye care professional immediately if you have any problem with your vision.
* Make sure you take eye drops as directed.
* Visit www.glaucoma.org for more information.
Note: The National Glaucoma Impact Survey patient findings are generalizable to Americans with glaucoma who met the survey entry criteria. The caregiver results are directional only; the sample size (n=60) is too small to be generalizable to all glaucoma-patient caregivers in the United States.