The Glaucoma Community is built on the idea that people living with glaucoma can learn from one another while helping advance research and education for the broader community.

Recently, Prevent Blindness conducted a survey sponsored by Astellas to better understand the experiences, challenges, and perspectives of people living with glaucoma. Many members of The Glaucoma Community participated, sharing valuable insights about disease awareness, treatment experiences, emerging therapies, and clinical research.

We want to thank everyone who took the time to complete the survey. Your feedback helped create a clearer picture of what matters most to people living with glaucoma today.

Click here to download the infographic. 

Many Participants Have Been Living with Glaucoma for Years

The survey included 66 people living with glaucoma, with an average age of 70 years. On average, participants had been living with glaucoma for 12 years. More than 60% reported living with the condition for at least five years. The survey respondents were primarily from the United States (86%), with some respondents (14%) from international audiences located in the United Kingdom, Canada, Nigeria, and Australia, among others.

These findings highlight something many community members already know: glaucoma is often a lifelong journey that requires ongoing monitoring, treatment, and communication with eye care professionals.

Understanding Your Glaucoma Stage Matters

One of the most notable findings was that about one-third of participants did not know their current glaucoma stage.

Glaucoma stages generally describe how much damage has occurred to the optic nerve and how much vision loss has developed. Early-stage glaucoma often causes little or no noticeable vision loss, while advanced stages can significantly affect peripheral (side) vision and daily activities.

Knowing your glaucoma stage can help you better understand how the disease is affecting your vision and why your doctor may recommend certain treatments or tests. If you are unsure about your stage, consider asking your eye care provider during your next appointment.

What Patients Want Most

When participants were asked about their treatment goals, they most commonly reported wanting to:

• Preserve their vision
• Slow disease progression
• Reduce dependence on eye drops
• Maintain independence and quality of life

These goals reflect concerns shared by many members of our community. While treatment plans may differ from person to person, the desire to protect vision and stay active remains a common priority.

Learning About Emerging Therapies

The survey also explored awareness of gene therapy, an area of ongoing research in glaucoma and other eye diseases.

Nearly three-quarters of participants reported they had never heard of gene therapy before taking the survey.

At the same time, many participants expressed interest in learning more about potential future treatment approaches.

This finding highlights the importance of patient education. As research continues to advance, people living with glaucoma need access to reliable, easy-to-understand information about new therapies, how they work, and what potential benefits and risks they may involve.

It is important to remember that many emerging treatments are still being studied and may not be available outside of clinical trials.

Interest and Caution Can Exist Together

Participants were asked about a hypothetical one-time treatment approach.

Many expressed interest in the possibility of reducing the burden of ongoing treatment. In fact, 68% reported being very or extremely interested in this type of treatment approach.

At the same time, participants also shared concerns about potential risks. More than half reported being very or extremely concerned about possible side effects or complications.

These responses show that patients carefully weigh both potential benefits and risks when considering new treatment options.

What Influences Clinical Trial Participation?

Clinical trials play an important role in advancing glaucoma research, and survey participants shared several factors that may influence their decision to participate.

Common considerations included:

• Travel requirements
• Scheduling appointments
• Length of study visits
• Potential treatment risks

These practical concerns are important. For many people, participating in research is not only about the treatment itself but also about how participation fits into daily life.

Understanding these challenges can help researchers design studies that are more accessible and patient-friendly.

Thank You for Making Your Voice Heard

Every survey response helps researchers, healthcare organizations, and patient advocates better understand the needs of people living with glaucoma.

We are grateful to every member who participated and shared their experiences. Your voice contributes to ongoing efforts to improve education, support future research, and help ensure that patient perspectives remain at the center of glaucoma care.

Sources:

• Astellas (May 2026). “A Survey of Individuals Living with Glaucoma: Treatment Experience & Awareness Overview.” PDF report.
• The Glaucoma Community (June 2026). “Understanding the Glaucoma Patient Experience.”

The information provided by The Glaucoma Community is for educational purposes only and does not replace professional medical advice. Always talk with your healthcare provider before making changes to your treatment or care. The Glaucoma Community does not endorse specific treatments, providers, or products.