Clinicians agree quality of life is a vital part of comprehensive glaucoma care
Most eye care providers agree that the goal of glaucoma care is to sustain a patient’s quality of life by preserving vision, and some also acknowledge that the process of rehabilitation should be a larger focus.
One clinician recently shared study results indicating that progressive retinal nerve fiber layer (RNFL) loss was associated with quality of life measure changes in a study of 130 patients with glaucoma.
Carolina P.B. Gracitelli, MD, reported at this year’s American Glaucoma Society meeting that statistically significant relationships were found between change in binocular RNFL thickness and change in National Eye Institute Visual Functioning Questionnaire – 25 (NEI VFQ-25) scores. The study was conducted at the Visual Performance Laboratory of the University of California San Diego, under the direction of Felipe Medeiros, MD, PhD, professor of ophthalmology.
For every 1 µm per year of loss of RNFL thickness, patients lost 1.1 units in quality of life measure, she said. A statistically significant relationship was also found between change in binocular standard automated perimetry (SAP) sensitivity and NEI VFQ-25 scores, wherein 1 dB of loss per year in binocular SAP sensitivity resulted in loss of 3.2 units of quality of life measure. The effect of RNFL thickness change in explaining a decline in quality of life was still present even after adjusting for the amount of visual field loss.
Severity of disease at baseline was also associated with quality of life change, with every 1 dB lower baseline SAP sensitivity measure accountable for an additional 0.24 greater decline in quality of life change, she said.
“These findings suggest that rates of structural change assessed by optical coherence tomography imaging may be valid markers for the degree of self-reported disability associated with glaucoma,” Gracitelli said at the meeting.
“Evaluation of structural optic nerve damage is a fundamental part of diagnosis and management of glaucoma,” she continued. “However, the relationship between structural measurements and disability associated with the disease is not well characterized. Quantification of this relationship may help validate structural measurements as markers directly relevant to quality of life. Our results indicate that imaging provides additional information that might not be fully captured by SAP in explaining changes in quality of life in glaucoma patients.”
A study published in 2009 found that even patients with mild glaucoma reported decreased quality of life.
Goldberg and colleagues stated in the Journal of Glaucoma that they used the Glaucoma Quality of Life-15 Questionnaire (GQL-15) to assess patients.
“Although there were little differences between patients with mild glaucoma and controls in terms of perimetric findings, those with mild glaucoma clearly have significantly higher summary scores on GQL-15 and, therefore, reduced QoL,” they wrote. “Clinically, one may assume that an individual with early glaucoma but normal visual field testing has no functional visual disability, but we have demonstrated that this is, in fact, not true. Early glaucoma might cause functional visual disability even if none is demonstrated objectively.”
Measuring quality of life
Scott Anthony, OD, FAAO, an adjunct assistant professor of clinical optometry and chief of optometry at the Cleveland VA Medical Center, said in an interview with Primary Care Optometry News, “Quality of life is the major focus of optometrists who treat glaucoma. Our number one priority is to preserve vision by constructing the best glaucoma treatment plans for our patients.”
He explained his process for evaluating quality of life issues in glaucoma patients.
“I rely on a detailed ocular, medical and social history to evaluate quality of life issues related to their glaucoma,” he said.
Derek MacDonald, OD, FAAO, a private practitioner in Ontario, told PCON: “I query every patient about adverse effects of or intolerance to medical treatment: both local ocular discomfort, for example, and systemic, like breathing difficulties. If anything is reported, we’ll do our best to implement a change in treatment to address their concerns without any loss of efficacy.”
Several studies, including one conducted by Skalicky and colleagues and published in the American Journal of Ophthalmology, found increasingly negative questionnaire results as the severity of glaucoma increased.
“Summary GQL-15 score decreased significantly with increasing glaucoma severity,” they wrote. “These findings reflected decreased QoL with increasing glaucoma severity.”
Anthony said that this is true of his patients as well.
“In mild glaucoma, I rarely see quality of life issues other than the burden of adhering to daily instillation of glaucoma drops,” he stated. “Moderate and advanced glaucoma patients tend to have an awareness that the quality of vision is worse in the affected eyes. Most of these patients are able to maintain activities of daily living; however, the level at which they perform them may be reduced.”
He continued: “End-stage glaucoma has profound effects on quality of life that can be far-reaching. These patients oftentimes lose their ability to function independently.”
Anthony said that these patients often come to their appointments with relatives or friends.
In a presentation at this year’s SECO meeting, David S. Friedman, MD, MPH, PhD, said that quality of life measures are not always accurate, and specific measures produce better results.
“Perfect correlation with measured vision loss and self-report is not expected,” he said. “The strongest correlation with tests of visual function are found to be with glaucoma-specific questionnaires.”
The questionnaires vary, but those specific to glaucoma ask questions targeting issues that glaucoma patients might experience, such as bumping into objects or difficulty reading.
“I find it very helpful to discuss with the patient what their life is like,” Anthony said. “Who do they live with? What do they do during the day? What activities do they enjoy? Does somebody help care for them? This helps me understand how glaucoma ‘fits’ into their life and helps me tailor a realistic treatment plan.”
How glaucoma manifests in daily life
Scott A. Edmonds, OD, FAAO, co-director of the low vision and contact lens services at Wills Eye Hospital in Philadelphia and a member of the PCON Editorial Board, provides rehabilitation to glaucoma patients.
He said specific issues that typically affect glaucoma patients may include loss of driver’s license and then dealing with not being able to drive, mobility issues, bumping into objects while walking, fear of stairs and fear of crossing the street.
“Some have reduced visual acuity – most of these have other ocular disease such as dry macular degeneration,” he said in an interview. “These people have trouble reading, using the computer, shopping and other tasks that require good central acuity.”
MacDonald told PCON that the most common issues he sees are related to medication intolerance.
“Things like ocular surface disease and exacerbation of pre-existing dry eye, most often due to preservatives,” he said. “Post-filtration surgery, ocular hypotony and chronic bleb awareness are concerns that are very difficult to address.”
In various studies in which Friedman has been involved, he and his colleagues have evaluated several aspects of quality of life in glaucoma patients, including reading and mobility.
Friedman said in his presentation at SECO that reading is the most common reason for referral.
“Older patients spend a lot of time reading and want to read – it’s one of the most common complaints,” he explained.
In one study (Ramulu et al., 2013), Friedman and colleagues found a significant difference in reading speed in glaucoma patients when compared to those without the disease. All patients silently read seven pages of a book, with each page consisting of the same number of words. Glaucoma patients were found to read 32 fewer words each minute, which Friedman compared to having more than 4 years fewer education.
Other studies investigating changes in physical activity found significant differences as well.
Friedman said a study he conducted using accelerometers (Ramulu et al., 2012) found that participants with no vision loss did 20 minutes of moderate/vigorous physical activity, but those with bilateral visual field loss did only 10 minutes.
“The impact of visual field loss on physical activity is large,” he said. “It’s almost the same impact as congestive heart failure, and it’s worse than arthritis.”
The risk of bumps and falls can also limit physical activity.
Friedman and colleagues, as part of the Salisbury Eye Evaluation Project, used an obstacle course designed to mimic real life.
“Patients with bilateral glaucoma completed the course 2.4 meters per minute more slowly and with 1.65 times more bumps,” he said. “There was no significant association with mobility and unilateral glaucoma. If you only have glaucoma in one eye, you’re going to be OK. Keep an eye on the fellow eye.”
He continued: “Falls are the number-one cause of injury-related death over age 65. Fear of falling is much more common in those with glaucoma. They walk more slowly, restrict activities, become more dependent and experience difficulties with travel, grocery shopping and preparing meals.”
Dependency can also be affected by other issues, Friedman explained.
“Independence relies on driving,” he said. “If you can’t drive, you’re much more likely to be depressed and to be in long-term care. It’s the primary mode of transportation and it’s a highly valued function in the visually impaired.”
Effect of glaucoma on sleep
Gracitelli also found that retinal ganglion cells damaged by glaucoma affect patients’ sleep quality.
The researchers conducted a cross-sectional study to assess the role of intrinsically photosensitive retinal ganglion cells (ipRGCs) and how they relate to glaucomatous structural damage.
As reported in Ophthalmology, the study included 45 participants; 32 participants had been diagnosed with glaucoma and 13 participants were deemed healthy. Researchers evaluated pupillary reflexes and measured pupil diameter. They also flashed different wavelengths of light to stimulate ipRGCs and retinal photoreceptors. Additionally, participants underwent SAP, polysomnography and Cirrus OCT (Carl Zeiss Meditec) testing.
Results showed that glaucoma patients had significantly more periodic limb movements and higher arousal durations after falling asleep, as well as significantly lower sleep efficiency and lower average total sleep time. The researchers also reported that glaucoma patients demonstrated decreased reflexes to the flashes of light and had significantly lower RNFL thickness.
“The main clinical finding of our study is that glaucoma leads to RGC death, including ipRGC death,” the authors concluded. “These cells are connected to several nonimage-forming functions, including circadian photoentrainment and pupillary reflexes. Therefore, the image-forming and nonimage-forming visual systems are associated with glaucoma.
“Circadian function has not been well investigated in clinical daily practice,” they continued, “but it can interfere with the quality of life in these patients. Concerns about sleep disturbances in patients with glaucoma should be incorporated into clinical evaluations.”
Anthony commented that while this study does not address the relationship between glaucoma severity and sleep disturbance, it highlights the need for greater clinical awareness of sleeping patterns for all glaucoma patients.
“Although not always definitive, studies such as this have relevance in building our understanding of the nonvisual, quality of life issues that glaucoma patients may incur as they cope with this disease,” Anthony said.
Edmonds explained that the patients he sees for rehabilitation represent the minority of glaucoma patients, but they can experience significant difficulties.
“The glaucoma surgical team has a number of new surgical options and can preserve vision better than ever before,” Edmonds said. “As such, 90% of these patients have good vision, and the disease has minimal impact on their quality of life.”
Edmonds outlined how he goes about improving quality of life for impaired patients, which begins with a low vision refraction at 10 feet with a trial frame and handheld lenses.
“Often these patients have uncorrected refractive error related to multiple glaucoma procedures,” he said. “They have high cylinder and irregular astigmatism. We use prism, sometimes yoked prism or press-on prism, to expand the useful field.
“We are just starting an eye movement rehabilitation program that is similar to the one we use for concussion, stroke and brain injury patients to teach compensative eye movements to improve function in spite of field loss,” he added.
Edmonds also told PCON that while there are devices that can help patients, they are not the optimum treatment plan.
“Sometimes magnifiers can be helpful,” he said. “But rehabilitation is better than any devices.”
For optometrists interested in incorporating quality of life rehabilitation into their practices, there are several ways to do so, the doctors explained.
“Other than low vision optometrists, most do not have training on quality of life issues and related rehabilitation,” Edmonds said. “Most people associate low vision with macular degeneration rather than glaucoma. Optometrists can seek out courses on rehabilitation as part of their continuing education.”
“The first step would be to identify quality of life issues with your patients and determine their motivation for rehabilitative services,” Anthony said. “Most practices will need to refer patients to a vision rehabilitation center in their area, so networking with these facilities will be an important step in facilitating this type of care.”
MacDonald advised that analyzing treatments can help in improving quality of life.
“Optometrists can incorporate rehab by diligently monitoring the disease state and the patient’s satisfaction with, and adherence to, their current treatment regimen,” he said. “I do believe that there is a role for things like validated QoL questionnaires, particularly when quantification is being sought. I also believe that there is no replacement for face-to-face discussion between the optometrist and the patient, whether in lieu of or in follow-up to such a questionnaire.”
Friedman told PCON that optometrists can ask specifically about difficulties with activities and can raise the issue of frequent problems.
“Many patients with glaucoma are not totally clear on how glaucoma is affecting them in their daily lives,” he said. “Doctors can recognize the needs of their patients and make recommendations regarding things like lighting, driving and mobility. Alternately, they can refer to low vision services.”
Friedman said in his presentation: “People don’t need to be told about ganglion cells – it’s a small part. We need to be doing much more to understand what is happening to patients in their daily lives.” – by Chelsea Frajerman Pardes
- Friedman DS, et al. New Angles on Glaucoma. Course presented at: SECO; March 5, 2015. Atlanta, GA.
- Friedman DS, et al. Ophthalmology. 2007;114(12):2232-2237.
- Goldberg I, et al. J Glaucoma. 2009;18(1):6-12.
- Gracitelli CP. Course presented at: American Glaucoma Society; March 1, 2015. Coronado, CA.
- Gracitelli CP, et al. JAMA Ophthalmol. 2015;133(4):384-390;doi:10.1001/jamaophthalmol.2014.5319.
- Gracitelli CP, et al. Ophthalmology. 2015;122(6):1139-1148; doi:10.1016/j.ophtha.2015.02.030.
- Ramulu PY, et al. Ophthalmology. 2012;119(6):1159-1166; doi:10.1016/j.ophtha.2012.01.013.
- Ramulu PY, et al. Invest Ophthalmol Vis Sci. 2013;54(1):666-672; doi:10.1167/iovs.12-10618.
- Skalicky SE, et al. Am J Ophthalmol. 2012;153(1):1-9.
- For more information:
- Scott Anthony, OD, FAAO, is an adjunct assistant professor of clinical optometry and chief of optometry at the Cleveland VAMC. He can be reached at Scott.Anthony@va.gov.
- Scott A. Edmonds, OD, FAAO, is a co-director of the low vision service and contact lens service at Wills Eye Hospital and a member of the PCON Editorial Board. He can be reached at firstname.lastname@example.org.
- David S. Friedman, MD, MPH, PhD, is the director at the Dana Center for Preventive Ophthalmology and a professor of ophthalmology at Johns Hopkins. He can be reached at David.Friedman@jhu.edu.
- Carolina P.B. Gracitelli, MD, of the Ophthalmology Department at the Federal University of São Paulo, São Paulo, Brazil, can be reached at email@example.com.
- Derek MacDonald, OD, FAAO, is a private practitioner in Waterloo, Ontario. He can be reached at firstname.lastname@example.org.
Disclosures: Anthony reports no relevant financial disclosures. Edmonds reports no relevant financial disclosures. Friedman received honoraria for conducting research and speaking for Alcon and is a paid consultant to Pfizer. Gracitelli reports no relevant financial disclosures. MacDonald reports no relevant financial disclosures.