Disability In Glaucoma
Open-angle glaucoma affects almost 2% of the American population greater than 40 years old, making the estimated number of Americans affected by the year 2020 to be almost 3.4 million1. The World Health Organization estimated that the prevalence of blindness related to all types of glaucoma was approximately 8 million people, making glaucoma the second leading cause of blindness worldwide2. Understanding the disability caused by glaucoma and at which point in the disease it is caused will be useful in knowing when a patient should be aggressively treated. This knowledge can also aid in the formulation of guidelines aimed to increase both the safety of the patient and the safety of those living in their surrounding community3.
- 1 Problems of Which Patients Complain
- 2 Scales
- 2.1 National Eye Institute Visual Function Questionnaire (NEI-VFQ)
- 2.2 Glaucoma Symptom Scale (GSS)
- 2.3 VF-14
- 2.4 Glaucoma Quality of Life – 15 (GQL-15)/Glaucoma Activity Limitation (GAL-9)
- 2.5 Assessment of Disability Related to Vision (ADREV)
- 2.6 Useful Field of View (UFOV)
- 2.7 Self-Reported VS Direct Measures
- 3 Resources for Patients
- 4 Requirements for Disability in America
- 5 Additional Resources
- 6 References
Problems of Which Patients Complain
Unfortunately, patients with glaucoma have difficulty with a variety of tasks, particularly if the patient suffers from bilateral disease3. Difficulty performing tasks in extremely low or extremely bright light is the most frequent complaint of patients with glaucoma, and contrast sensitivity has been shown to be a predictor of a patient’s ability to perform activities of daily living3,4. Additionally, patients also report difficulty with reading, walking, and driving. Tasks involving central and near vision (such as reading), as well as mobility outside of the home are valued most by patients with glaucoma, while tasks relating to glare, bumping into objects, and performing household chores are given less importance.
Of patients with any eye pathology, difficulty reading is the most frequent complaint3. In the Salisbury Eye Evaluation (SEE), patients with advanced bilateral glaucoma were five times more likely to report difficulty with near vision tasks than those without glaucoma5. It is interesting to note, however, that self-reported difficulty and demonstrated difficulty were strongly discordant6. In fact, only patients with the most advanced glaucoma were objectively found to have diminished reading speed7. The reason for this might be that reading was tested for only a short period of time (~15 seconds), and any difficulties that would occur with prolonged reading might not have had a chance to manifest3. While it is not intuitive that patients with a disease process that primarily affects peripheral vision have problems with a central vision task such as reading, the trouble might also come from difficulty following a line of print or finding the next line, as these tasks were reported as more difficult in patients with worse bilateral visual fields8.
Compared to their aged matched controls, patients with glaucoma walk more slowly. Additionally, the walking speed of patients with glaucoma is strongly correlated with the mean deviation in the visual field of the worse eye9. In the SEE, patients with bilateral (but not unilateral) glaucoma walked more slowly and bumped into things more often10. It is no surprise that the tendency to bump into things is likely due to constriction of the visual field, as demonstrated by the ability to create this tendency in normal individuals by artificially constricting their visual field11. Furthermore, patients with glaucoma tend to sway more than normal individuals, and greater sway is associated with more visual field loss in the better eye12,13. That this difference in sway is not noted when the test is performed with the eyes closed supports the idea that the difference in visual function, rather than a vestibular one, is responsible for the difference in steadiness between groups. The disability caused by this assault on mobility is not trivial. Various studies have shown that elderly patients with difficulty walking are more likely to live in nursing homes or assisted living facilities, and that fear of falling leads to decreased quality of life, higher morbidity, and higher mortality3.
Driving is the primary means of transportation for the elderly in the United States3. Elderly persons who stop driving are more likely to move into a long term care facility, have higher rates of depression, and report lower quality of life3.In the SEE, patients with bilateral, but not unilateral, glaucoma were more likely to stop driving than those without glaucoma7. The odds of driving cessation doubled for every 5 dB of visual field loss in the worse eye. Interestingly, although driving limitations were NOT more common in glaucoma patients than in those without glaucoma, these patients were more likely to attribute any driving difficulties they might have to their visual abilities. While the SEE did not find more driving limitations in patients with glaucoma compared to those without, many studies have shown glaucoma to be associated with motor vehicle accidents (MVAs). McGwin et al demonstrated that patients with advanced glaucoma had 3.5 times increased odds of being in a MVA14. Haymes et al similarly showed that glaucoma patients were more likely to have been in an MVA than those without glaucoma, but they also showed that an impaired Useful Field of View (UFOV – a measure of visual field, discussed below) was the strongest risk factor for being involved in a MVA15. Furthermore, in an on-road performance test, glaucoma patients with slight-moderate visual field impairment were able to complete a driving course, but were six times more likely to require instructor intervention16.In 2010, Crabb et al. published a study from the United Kingdom evaluating the eye movements of patients with glaucoma during simulated driving situations. The eye movements of nine patients with glaucoma were compared to those of ten age-matched controls. Over a series of 26 different simulated driving scenarios, patients with glaucoma made significantly more saccades per second, more fixations per second, and more smooth pursuits per second than those without glaucoma17. Interestingly, the average region of ‘point-of-regard’ did not vary significantly between the glaucoma patients and the control subjects, however, when patients’ visual fields were superimposed on driving scenes, there were situations in which hazards fell in areas of binocular visual field defect17.
Facial Recognition/Social Interaction
In addition to more having trouble with tasks that affect independent tasks such as those discussed above, patients with glaucoma also have difficulty recognizing faces. In a study by Glen et al, patients with glaucoma associated with visual field loss and contrast sensitivity loss had more difficulty recognizing faces than their age-matched controls with normal vision18. It goes without saying that the ability to recognize faces is an important factor in social interactions and relationships which in turn significantly impact ones quality of life.
Numerous scales to measure the quality of life (QOL) related to visual function have been developed. While some of these target quality of life related to visual function in general, other scales target assessment of QOL related to glaucoma-specific visual function.
National Eye Institute Visual Function Questionnaire (NEI-VFQ)
The National Eye Institute Visual Function Questionnaire (NEI-VFQ) is a survey that was proven to be both reliable and valid among six university-based ophthalmology practices as well as the National Eye Institute clinical Center in 199819. It was validated amongst patients with five chronic eye conditions (age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open angle glaucoma, and cytomegalovirus) and/or low vision from any cause (Visual acuity of 20/70 or worse in the better eye, or visual field constricted to 20 degrees).
The scale consists of 51 items amongst 13 subscales, and attempts to assess both daily functioning as well as the emotional/psychological effects of vision loss:
- General Health (2)
- General Vision (2)
- Ocular Pain (2)
- Near Vision (7)
- Distance Vision (7)
- Vision-Specific Social Functioning (4)
- Vision-Specific Mental Health (4)
- Expectations for Visual Function (3)
- Vision-Specific Role Functioning (5)
- Dependency Due to Vision (5)
- Driving (4)
- Peripheral Vision (1)
- Color Vision (1)
In 2000, a shorter, 25 question version, known as the NEI-VFQ 25 was shown to be reliable and valid compared to the original 51 question version when administered by an interviewer20. (Unfortunately, the self-administered version has not been tested.) It includes the same subsets included in the original version with the exception of expectations of visual function and takes approximately ten minutes to complete. There are numerous other versions of the NEI-VFQ that have been developed, including a 39 question version or the NEI-VFQ 25 in various languages.
Glaucoma Symptom Scale (GSS)
The Glaucoma Symptom Scale was developed in 1998 by Lee at al based off of a symptom checklist from the Ocular Hypertension Treatment Study21. It was tested in four tertiary care centers and shown to be valid when compared to the distance NEI-VFQ subscale and another scale called VF-14 (discussed briefly below). The GSS was also shown to reliably distinguish between patients with glaucoma and those without. gThe test evaluates how bothersome (Very, Somewhat, A Little, or Not at all) patients find ten symptoms– 6 nonvisual and 4 visual:
- Burning, Smarting, Stinging
- Soreness, Tiredness
- Blurry/Dim Vision
- Feeling of Something in Your Eye
- Hard to See in Daylight
- Hard to See in Dark Places
- Halos Around Lights
The validity of the GSS as a measure of performance amongst different racial populations has been questioned22–24, possibly related to the fact that many of these symptoms are related to ocular surface disease.
The VF-14 is a questionnaire developed at Johns Hopkins in 1994 to assess visual function caused by cataract25. It was validated and proven to be reliable over the practices of 70 ophthalmologists in three cities in America (Columbus, OH; St. Louis, MO; Houston, TX) and has since been validated in many languages other than English26.
The questionnaire consists of asking patients to rate their difficulty (None, A Little, Moderate, Great Deal, Unable to Do) on 14 vision-dependent tasks of daily living such as reading, recognizing people, seeing steps, performing fine handiwork, writing, playing games, playing sports, preparing meals, watching television, and driving.
Glaucoma Quality of Life – 15 (GQL-15)/Glaucoma Activity Limitation (GAL-9)
The Glaucoma Quality of Life-15 questionnaire was developed in 200327. It was shown to correlate well with objective measures of visual function and discriminated between QOL in patients with glaucoma and those without.
The test evaluates the level of difficulty patients have with 15 different tasks (None, A Little Bit, Some, Quite a Lot, Severe):
- Reading Newspapers
- Walking after Dark
- Seeing at Night
- Walking on Uneven Ground
- Adjusting to Bright Lights
- Adjusting to Dim Lights
- Going from Light to Dark Room, Vice-Versa
- Tripping Over Objects
- Seeing Objects From the Side
- Crossing the Road
- Walking on Steps/Stairs
- Bumping into Objects
- Judging Distance of Foot to Step/Curb
- Finding Dropped Objects
- Recognizing Faces
Later analysis of the GQL-15 showed that removal of six items resulted in better precision – resulting in a new scale called the Glaucoma Activity Limitation (GAL-9) questionnaire28.
Assessment of Disability Related to Vision (ADREV)
The Assessment of Disability Related to Vision (ADREV) was developed by the Glaucoma division at the Wills Eye Institute in 200929. It is a third-generation measure – based off the Assessment of Function Related to Vision (AFREV) developed in 200630. Unlike the other tests discussed above, the ADREV is a task test rather than a questionnaire, consisting of nine tasks that simulate activities of daily living:
- Reading in reduced illumination
- Recognizing facial expression
- Detecting Motion
- Recognizing Street Signs
- Locating Objects
- Ambulating on an Obstacle Course
- Placing Pegs into Different Sized Holes
- Matching socks.
These tasks were selected based on the results of a previous study that aimed to develop a ‘Task Performance Test’ and showed that patients with glaucoma had difficulty performing similar tasks compared to a reference group. All of the above nine tasks were made difficult to the point where only 90% of normal people could complete them.
By asking patients to perform tasks rather than give their opinions of their visual function, the ADREV attempts to eliminate the error that is incorporated by the subjective translation of disability into a grading system. Possibly as a result, the ADREV correlates more highly to clinical tests than the NEI-VFQ 25. However, the practicality of administering a performance-based measure is low, limiting its ability to be used by clinicians in assessing their patients.
Useful Field of View (UFOV)
The Useful Field of View (UFOV) test is a computer based test created by the Visual Awareness Group (www.visualawareness.com). The test measures the speed at which one can process information in a thirty-degree field, in a single glance, under various conditions. It also assesses the ability of the test taker to divide attention and to ignore irrelevant information. It has been associated with driving performance and motor vehicle accidents and only takes about 15 minutes to complete.
Self-Reported VS Direct Measures
As demonstrated above, measures of disability are either self-reported (NEI-VFQ, GSS, VF-14, GQL-15/GAL-9) or direct measures (ADREV, UFOV).
Self-reported measures tend to include the patient’s perception of their disease and are easy to administer3. They ask for assessment of task performance in real-world situations. The down side to self-reported measures is that patient awareness of their eye disease may cause them to notice and report more symptoms that may or may not be related to their eye pathology and the clinical significance of differences in self-reported scores is unclear. Furthermore, when patients’ visual disability causes them to stop performing a task, impairment during performance of this task may go unreported. Finally, self-reported measures may not be an accurate reflection of true functionality. For example, as mentioned earlier, self-reported difficulty with reading and demonstrated difficulty with reading were strongly discordant in the SEE study6.
Conversely, directly measured outcomes have the benefit of testing abilities under standard conditions –but this does not necessarily capture real-world settings and may miss rare events of difficulty. Direct measures are also less subject to reporting bias. The quantitative results can be easier to analyze, but the tests are harder to administer.
Resources for Patients
Low vision centers and local agencies for persons with disabilities can usually provide services and equipment to help those with visual disability function efficiently and independently. Some organizations that aid with low vision teaching and services include LightHouse, Lions Club, and Low Vision clinics at the Veterans Affairs hospitals (the latter for Veterans only).
Various devices to aid low vision patients with reading can be found. Not only do digital readers have the option of enlarging the print, but also available are numerous magnifiers – hand held or desk-top, with and without lights, or even on necklaces. There are even guides to help patients see where they need to sign their name on documents, how to fill in checks, or jumbo print items like playing cards, keyboards, telephones, or watches. Closed-circuit televisions (CCTVs) are also very helpful, but unfortunately these tend to cost several thousands of dollars thereby limiting their availability to many patients. Cell phones can be made more user friendly by the addition of vaulted stickers on certain number keys so that patients can use their sense of touch rather than their sense of sight to determine if they are pressing the correct number. Talking devices, such as watches, digital readers, and GPS can also can significantly improve quality of life. In fact, also available are medication bottles that can tell a patient the name of the contained medication as well as how much to take and when to do so (http://www.ablehomeaides.com/talkingpill.html). Finally, learning braille is also an option for low vision patients, and the organizations mentioned above (LightHouse, Lions Club, VA hospitals) as well as local organizations can help with braille education.
Walking & Balance
Stabilizing devices such as walking canes or walkers can aid when patients have difficulty maneuvering. Non-slip bath mats and portable bathtub and bedside handles can also aid in making activities of daily living safer for patients.
Perhaps the most difficult aspect of visual dysfunction is assessing mobility outside of the home. There are various options that those with limited vision can consider:
- Travel Training – Public transport agencies as well as local aging organizations provide free instruction to persons with disabilities so that they might learn to navigate public transportation systems safely and independently.
- Taxi Services
- Public Transit/Fixed Route Service
- Volunteer Driver Programs – Usually local faith-based and/or nonprofit organizations provide flexible transportation for various activities through volunteers.
- Paratransit Services – these can be either door-to-door or curb-to-curb services through public transit, aging organizations, or private agencies.
- Door-through-Door (Escort) Services – these are generally private companies that provide hands-on assistance in getting to and from their final destinations.
- Transportation Vouchers – Local disability resource agencies sometimes provide vouchers and/or fare-assistance for those with disabilities to employ providers for transportation needs.
Requirements for Disability in America
According to the American Foundation for the Blind, legal blindness (best corrected visual acuity of 20/200 or less in the better eye, and/or visual field of 20 degrees or less) is the level of vision loss that has been set to determine eligibility for benefits.
- American Academy of Ophthalmology. Glaucoma: Visual disability and quality of life issues for glaucoma patients Practicing Ophthalmologists Learning System, 2017 - 2019 San Francisco: American Academy of Ophthalmology, 2017.
1. Friedman, D. S. et al. Prevalence of open-angle glaucoma among adults in the United States. Arch. Ophthalmol. 122, 532–538 (2004).
2. Cioffi, G. A. & American Academy of Ophthalmology. Glaucoma. (American Academy of Ophthalmology, 2011).
3. Ramulu, P. Glaucoma and disability: which tasks are affected, and at what stage of disease? Curr. Opin. Ophthalmol. 20, 92–98 (2009).
4. Richman, J. et al. Importance of visual acuity and contrast sensitivity in patients with glaucoma. Arch. Ophthalmol. 128, 1576–1582 (2010).
5. Freeman, E. E., Muñoz, B., West, S. K., Jampel, H. D. & Friedman, D. S. Glaucoma and quality of life: the Salisbury Eye Evaluation. Ophthalmology 115, 233–238 (2008).
6. Friedman, S. M. et al. Characteristics of discrepancies between self-reported visual function and measured reading speed. Salisbury Eye Evaluation Project Team. Invest. Ophthalmol. Vis. Sci. 40, 858–864 (1999).
7. Ramulu, P. Y., West, S. K., Munoz, B., Jampel, H. D. & Friedman, D. S. Glaucoma and reading speed: the Salisbury Eye Evaluation project. Arch. Ophthalmol. 127, 82–87 (2009).
8. Viswanathan, A. C. et al. Severity and stability of glaucoma: patient perception compared with objective measurement. Arch. Ophthalmol. 117, 450–454 (1999).
9. Turano, K. A., Rubin, G. S. & Quigley, H. A. Mobility performance in glaucoma. Invest. Ophthalmol. Vis. Sci. 40, 2803–2809 (1999).
10. Friedman, D. S., Freeman, E., Munoz, B., Jampel, H. D. & West, S. K. Glaucoma and mobility performance: the Salisbury Eye Evaluation Project. Ophthalmology 114, 2232–2237 (2007).
11. Hassan, S. E., Hicks, J. C., Lei, H. & Turano, K. A. What is the minimum field of view required for efficient navigation? Vision Res. 47, 2115–2123 (2007).
12. Shabana, N. et al. Postural stability in primary open angle glaucoma. Clin. Experiment. Ophthalmol. 33, 264–273 (2005).
13. Black, A. A., Wood, J. M., Lovie-Kitchin, J. E. & Newman, B. M. Visual impairment and postural sway among older adults with glaucoma. Optom. Vis. Sci. Off. Publ. Am. Acad. Optom. 85, 489–497 (2008).
14. McGwin, G., Jr et al. Visual field defects and the risk of motor vehicle collisions among patients with glaucoma. Invest. Ophthalmol. Vis. Sci. 46, 4437–4441 (2005).
15. Haymes, S. A., Leblanc, R. P., Nicolela, M. T., Chiasson, L. A. & Chauhan, B. C. Risk of falls and motor vehicle collisions in glaucoma. Invest. Ophthalmol. Vis. Sci. 48, 1149–1155 (2007).
16. Haymes, S. A., LeBlanc, R. P., Nicolela, M. T., Chiasson, L. A. & Chauhan, B. C. Glaucoma and on-road driving performance. Invest. Ophthalmol. Vis. Sci. 49, 3035–3041 (2008).
17. Crabb, D. P. et al. Exploring eye movements in patients with glaucoma when viewing a driving scene. PloS One 5, e9710 (2010).
18. Glen, F. C., Crabb, D. P., Smith, N. D., Burton, R. & Garway-Heath, D. F. Do patients with glaucoma have difficulty recognizing faces? Invest. Ophthalmol. Vis. Sci. 53, 3629–3637 (2012).
19. Mangione, C. M. et al. Psychometric properties of the National Eye Institute Visual Function Questionnaire (NEI-VFQ). NEI-VFQ Field Test Investigators. Arch. Ophthalmol. 116, 1496–1504 (1998).
20. Mangione, C. M. et al. Development of the 25-item National Eye Institute Visual Function Questionnaire. Arch. Ophthalmol. 119, 1050–1058 (2001).
21. Lee, B. L. et al. The Glaucoma Symptom Scale. A brief index of glaucoma-specific symptoms. Arch. Ophthalmol. 116, 861–866 (1998).
22. Gothwal, V. K. et al. Glaucoma symptom scale: is it a reliable measure of symptoms in glaucoma patients? Br. J. Ophthalmol. 97, 379–380 (2013).
23. Lamoureux, E. L. et al. Are standard instruments valid for the assessment of quality of life and symptoms in glaucoma? Optom. Vis. Sci. Off. Publ. Am. Acad. Optom. 84, 789–796 (2007).
24. Ringsdorf, L., McGwin, G., Jr & Owsley, C. Visual field defects and vision-specific health-related quality of life in African Americans and whites with glaucoma. J. Glaucoma 15, 414–418 (2006).
25. Steinberg, E. P. et al. The VF-14. An index of functional impairment in patients with cataract. Arch. Ophthalmol. 112, 630–638 (1994).
26. Chiang, P. P.-C., Fenwick, E., Marella, M., Finger, R. & Lamoureux, E. Validation and reliability of the VF-14 questionnaire in a German population. Invest. Ophthalmol. Vis. Sci. 52, 8919–8926 (2011).
27. Goldberg, I. et al. Assessing quality of life in patients with glaucoma using the Glaucoma Quality of Life-15 (GQL-15) questionnaire. J. Glaucoma 18, 6–12 (2009).
28. Khadka, J. et al. Reengineering the glaucoma quality of life-15 questionnaire with rasch analysis. Invest. Ophthalmol. Vis. Sci. 52, 6971–6977 (2011).
29. Lorenzana, L. et al. A new method of assessing ability to perform activities of daily living: design, methods and baseline data. Ophthalmic Epidemiol. 16, 107–114 (2009).
30. Altangerel, U., Spaeth, G. L. & Steinmann, W. C. Assessment of function related to vision (AFREV). Ophthalmic Epidemiol. 13, 67–80 (2006).