Early glaucomatous changes can be asymptomatic for many patients. At times, it can be hard for patients to grasp the severity of the disease, especially because structural damage precedes symptoms.
In these cases, an early diagnosis can be shocking to hear as it often comes without any warning signs or visual changes. Even patients who’ve been told they’re a glaucoma suspect can find it hard to accept they now need to begin treatment.
In this article, we’ll review best practices for compassionate glaucoma care to understand a patient’s perspective better and improve our approach to patient education. We’ll also discuss ways to collaborate with primary care, behavioral health, and other possible rehabilitative options.
A brief glaucoma overview
The leading cause of irreversible blindness in the United States (and in the world) is glaucoma, affecting 80 million patients worldwide. In fact, it is projected to be over 111 million by 2040. Although it comes with various causes, 3 million Americans are diagnosed with glaucoma. Further, 90% are 40 years old or older and have primary open-angle glaucoma (POAG).
Mild changes to peripheral vision can be an early symptom of glaucoma, but it is one that’s easily missed due to how our brain and eyes compensate for visual disruptions. Pertinent clinical risk factors for glaucoma are increased optic nerve cupping—specifically vertical elongation, elevated intraocular pressure (IOP), thinner corneas, and immediate family history of glaucoma. Diagnosis and treatment both require consideration of multiple factors for a full scope of management.
Ultimately, our goal is to preserve functional vision, delaying any substantial vision loss and psychological impacts the disease causes. Preserving our patients’ remaining vision allows them to continue their activities of daily living without significant compromise.
Figure 1 shows fundus photography of the right eye of a 50-year-old Haitian male patient who was diagnosed with primary open-angle glaucoma. He has a positive family history but did not notice any visual symptoms before his diagnosis.
Figure 1: Courtesy of Sasha Patel, OD.
The functional impact of glaucoma
The progressive vision changes that are hallmarks of glaucoma can be similar to mental health distress. As glaucomatous symptoms are less conspicuous, it can help to review which types of tasks are becoming more challenging for the patient. This not only sheds light on their current functional impacts but also helps patients to be more aware of the condition.
Initiating discussions about glaucoma recognition and management techniques is important to ensure that patients can appropriately identify and cope with vision changes.
Glaucoma recognition and management techniques
1. Physical everyday limitations caused by glaucoma
Particular tasks can become more bothersome when glaucomatous changes affect everyday activities. It may take a few extra glances to see something in the periphery. More attention may be due to mobility and orientation difficulties. When the inferior visual field is affected, early changes may be associated with decreased mobility (e.g., walking down stairs). A patient might stumble or be more attentive when walking.
In fact, distance visual tasks and driving had the highest amount of detrimental effects in one study.1 When driving, it is possible to scrutinize certain decisions, such as shifting lanes or parking. Night-driving challenges may arise due to reduced contrast sensitivity or depth perception.2 Whether it is a distance or near-related task, any situation with dim illumination could influence visual function.
Even hand-eye coordination can be difficult with more severe optic nerve damage and visual field changes. For example, my grandfather used to have difficulty finding what he was searching for on a dinner plate from his advanced glaucoma.
Although these physical functions do not signify a patient has glaucoma, it can be worthwhile to review. This way, patients can feel comfortable disclosing their vision-related difficulties. Patients will appreciate your valuable input, helping build a strong rapport.
2. Cognitive changes
Vision impairments lead to reduced or compromised stimuli for the brain to analyze. Glaucoma patients were found to have cognitive consequences, including poor facial memory recognition.3-4 In one study, decreased memory and executive function were found in 20 to 22% of the tested population, respectively, with an average age of 70 years old.5
It is imperative to be mindful that patient compliance may be hindered by these cognitive changes—patients may be forgetful with topical treatment schedules. As you see your glaucoma patients for follow-up management, it is wise to reiterate our goal to minimize glaucoma progression, especially for those with memory deficits. Speaking with a patient’s caretaker(s) and/or referring for glaucoma surgery can also be useful in these cases of noncompliance.
3. Psychological obstacles
It can be unsettling to receive a diagnosis of glaucoma, as well as prepare for the possibility of future vision loss. Mental health disorders that glaucoma patients face can significantly affect their quality of life.
Among them are psychosocial impacts, including:
- Depression
- Anxiety
- Negative self-image
- Social isolation or loneliness
- Reduced psychological well-being5-6
Studies show that 25% of those with vision loss reported having depression and anxiety. Overwhelming stresses of diminishing vision or having the possibility of facing permanent blindness are compounded by everyday functional changes. Another consideration is the financial burdens of the chronic disease, which requires follow-up exams, testing, treatment, and possible ocular surgery.
Do not hesitate to recommend a referral to a behavioral health expert when indicated or if a poor prognosis is of concern. It is advantageous for patients to feel safe with a professional who specializes in mental health.
Low vision rehabilitation exams are a critical tool to determine and find constructive solutions to any functional vision difficulties; it will also establish a better sense of independence. A holistic approach that may be recommended for these emotional conditions is meditation therapy.8-9
Managing glaucomatous changes
Structural tests
Thorough testing and timely follow-up management are crucial to measuring the anatomical and functional impacts of glaucoma. Testing includes a myriad of procedures to analyze the structure and function of the optic nerve. The glaucoma management plan is modified as needed based on repeated testing and follow-up.
Structural damage is noted primarily with clinical fundoscopic exam, retinal photos, and optical coherence tomography (OCT) testing. Both are pertinent to monitor optic nerve appearance, retinal nerve fiber layer (RFNL), and macular changes. Red-free filters can reveal even the faintest RNFL defects. OCT scans, including ganglion cell complex (GCC) and RNFL analysis, show numerical as well as broad figures to pinpoint areas of fragility.
In advanced glaucoma, however, the OCT may fall short due to the flooring effect, where serial visual field tests are more helpful. The flooring effect typically occurs when retinal nerve fiber thickness falls below 40uM—the OCT is no longer able to detect thickness changes.
Functional testing techniques to assess glaucoma
Visual field tests provide insight into functional changes. They exhibit the patient’s peripheral deficits, highlighting early damage that may not have emerged as a visual symptom. Repetitive defects conclude true damage and will likely change the treatment goals or plan.
Honing into a 10-2 visual field for severe disease (or when central vision is affected) is recommended to monitor glaucomatous changes when necessary. Critically investigating each patient’s tests, presentation, and risk factors go hand in hand with understanding how to support and reassure our patients based on their prognosis and emotional state.
Share the game plan for delaying vision damage—discussing topical therapy, laser procedures, or future surgical interventions the patient may require. This will allow patients to be confident in their glaucoma management.
The functional effect of glaucoma: a patient’s perspective
In the following conversation, I discussed the functional impacts of glaucoma with a Jamaican female in her early 70s. She is a member of the church leadership and will delve into how the disease has affected her daily activities and quality of life.
What glaucoma treatment have you undergone thus far?
"At this time, I use Latanoprost at bedtime and Azopt three times a day in both eyes. I’ve gotten laser treatment a few times, as well as trabeculectomy and cataract surgery.”
With multiple topical IOP-lowering medications, compliance can be challenging, especially if everyday routines change. It can be frustrating to handle and stressful to cope with the direct consequences of not complying with treatment as directed.
Clinical Pearl: In some cases, considerations would include selective laser trabeculoplasty (SLT) as a first-line treatment or even cataract surgery with or without a microinvasive glaucoma surgery (MIGS) procedure.
Typically, symptoms for glaucoma appear once damage occurs; what were the first visual symptoms (if any) that you noticed?
“I did not notice any vision changes at first. I do remember some eye discomfort and pain around the time I was diagnosed.”
For the earliest stage of glaucoma, patients are asymptomatic. Typically vision signs occur after a significant portion of vision has already been lost. Others notice decreased night vision and/or progressive blurry vision depending on which part of the visual field is affected. This sheds light on why routine comprehensive eye exams play such a significant role in the early detection and diagnosis in glaucoma.
How has instilling prescription eye drops affected your life? Was that difficult to integrate into your everyday routine?
“Eventually, I had to stop working as a social worker due to the impact on my everyday routine.”
When prescribing glaucoma treatment, it can be easy to forget how the quality of life is significantly affected by having to apply drops often or at various times of the day. Substantial changes to livelihood or a patient’s favorite pastime can negatively impact the patient.
Clinical Pearl: Be upfront with having patients share their functional impacts. Do not hesitate to ask if vision or treatment is the cause of certain lifestyle changes. You may be able to offer a change to management or a creative solution to an issue.
Are there any everyday tasks that you have to perform differently due to glaucoma? Do you have to be attentive to your surroundings?
“I haven’t had to make shifts at work in the church, but I do have to be cautious walking on the stairs. I have mild peripheral vision changes, so I look carefully when shifting lanes. I also try to be more attentive when I take my dog on walks at night.”
Getting a sense of real-time challenges are beneficial to understanding functional changes. It can be a valuable piece to add to your analysis of visual field testing or if you suspect possible progression.
Have you faced any challenges going to follow-up visits (laser/surgical treatment, management, and testing)?
“Personally, this has not given me any difficulty. I am being monitored every 2 to 3 months at this time and understand the importance of close management.”
This is an important consideration for certain patients. They may rely on a family member who works full-time, glaucoma care may be out of town, or the cost of transportation adds up.
Clinical pearl: Management through follow-up is crucial, but if there are travel restrictions, create possible solutions such as consolidating special testing to efficiently accommodate their time.
Do you have any family members who’ve dealt with vision loss?
“My grandfather and father were blind in their 90s or older.”
Family history is a risk factor that cannot be ignored in glaucoma suspects. It can be a stressful diagnosis, but it can even instill dedication to close management needed to avoid possible hardships other family members faced.
Who has your support system been?
“My daughter has definitely been my biggest support throughout this process.”
Understanding how patients lean on loved ones for their vision impairments is helpful to know as an eye care physician. In fact, family members may notice possible nuisances that the patient is struggling with–ones that the patients themselves may be oblivious to.
Clinical pearl: It is productive to make caregivers aware of physical, cognitive, and psychological signs of mental health concerns. They can share if there are forgetfulness or dementia-related changes. Even certain repetitive negative remarks from patients may spark a conversation with a physician about mental health. Being conscious of caregiver fatigue is also important to keep in mind.
Dr. Patel: What do you think are mental health challenges you or others with glaucoma may face?
“Being fearful of blindness... You really can’t think ‘I am going to go blind tomorrow.’ You have to have a positive outlook and be in a place of hope. Be aggressive and do what needs to be done.”
Patients can go through different stages of grief during their vision impairment. Being attentive to mental health for glaucoma patients is profound to how you provide standard of care.
Empower with patient education
We have to remember that glaucoma is a daunting disease from the patient's perspective. Counseling about their management and plan should be done with care and understanding. In addition, repetition reinforces patients' habits and memories. This tactic is especially important for patients facing memory deficits.
Be sure to explain that there are tools to tackle the functional challenges that may arise. Glaucoma progression not only causes permanent visual impairment but can also be emotionally draining. Co-management with low-vision therapists can be necessary (and rewarding) for certain patients.
Sample script for discussing the functional impact of glaucoma with patients
After you counsel your patient about glaucoma findings, goals, and follow-up, take a moment to attend to the patient’s functional impacts.
Here are three sample openers for starting the conversation:
1. “You may notice that different activities have different visual demands. Glaucoma progression can impede some of these everyday tasks and make them more bothersome to do. I will review a few signs and symptoms I would like you to be aware of if you begin noting difficulties–these functional limitations can help me with your glaucoma management, as well as lay a framework on what functional effects you are having.”
2. “I understand that vision changes related to glaucoma can affect how you feel and can sometimes be unnerving or frustrating. If you encounter mental health challenges, feel free to let me know if you would like a referral to our behavioral health department. Otherwise, be sure to reach out for help.”
3. “Low vision specialists can assist with tools to work around visual impairments, and a psychologist, counselor, or social worker would provide an outlet to discuss any troubles you may be facing.”
Glaucoma patient resources
- Resource: Low vision rehabilitation
- Goals: Assess visual functions and limitations and find solutions to patient-specific goals.
- Benefits: Consistent, reliable improvements to QOL and suggestions for optical aids and devices.
- Resource: Therapy (with a psychologist or psychiatrist)
- Goals: Establish a safe space to discuss and manage the burdens of vision loss.
- Benefits: Build trust with a healthcare professional and learn healthy coping methods.
- Resource: Glaucoma support groups
- Goals: Connect with individuals with common experiences.
- Benefits: Share and learn from others in similar situations.
- Resource: Lighthouse Guild services for visually impaired people
- Goals: Services for health, support, research, and training.
- Benefits: Explore technology and assistance measures available.
Conclusion
The effects of glaucoma on a patient’s quality of life is a topic we should revisit from time to time as eyecare providers. By identifying and diving into functional impacts, it will allow us to bridge any gaps in our doctor-patient relationship by allowing the focus to be on trust and the well-being of our patients.
Don’t underestimate the tremendous impact that these conversations can have on your patient, practice, and glaucoma treatment success.
