Rehabilitation Referral for Patients With Irreversible Vision Impairment Seen in a Public Safety-Net Eye Clinic

Key Points

Question  What proportion of adults with irreversible vision impairment are referred to low-vision rehabilitation services by ophthalmology residents and attending ophthalmologists working in a publicly funded eye clinic that primarily serves uninsured persons?

Findings  In this cross-sectional study of 143 patients with irreversible vision impairment in 1 or both eyes, referral for low-vision rehabilitation services was low for patients with irreversible bilateral (11%) and unilateral (2%) vision impairment, as noted in the electronic health record.

Meaning  Findings highlight the need for improved education of ophthalmologists and residents in ophthalmology about referral to rehabilitation services for patients with low vision.

Importance  The prevalence of irreversible vision impairment in the United States is expected to increase by 2050. Vision rehabilitation is the primary treatment option. Clinical trials have established its efficacy in improving quality of life. Yet studies indicate that patients experience many barriers to accessing low-vision care.

Objectives  To examine the rate of referral for low-vision rehabilitation services by resident and attending ophthalmologists for adults with irreversible vision impairment and to assess the knowledge, attitudes, and beliefs of patients about vision rehabilitation.

Design, Setting, and Participants  Cross-sectional study with enrollment from June 20, 2016, to January 31, 2017, of 143 adults 18 years or older seen in a publicly funded, comprehensive eye clinic in Jefferson County, Alabama, and having 1 or both eyes with irreversible vision impairment (visual acuity was defined as 20/60 or worse) per the electronic health record.

Exposures  Demographic characteristics; patient questionnaire on knowledge, attitudes, and beliefs about vision rehabilitation; general cognitive status (Short Orientation-Memory-Concentration test); depressive symptoms (Patient Health Questionnaire-9); health literacy (Rapid Estimate of Adult Literacy in Medicine, Revised [REALM-R]); and self-reported difficulty in everyday activities.

Main Outcomes and Measures  Proportion of patients with irreversible vision impairment who were referred by ophthalmologists to low-vision rehabilitation services per the electronic health record.

Results  Of 143 patients enrolled with irreversible vision impairment in 1 or both eyes, the mean (SD) age was 55.4 (11.1) years and 68 (47.6%) were women. Most patients were African American (123 [86.0%]), uninsured (88 [61.5%]), and unemployed (92 [64.3%]); on average, they had normal cognitive status, minor depressive symptoms, and limited health literacy. As noted in the electronic health record, the rate of referral for low-vision rehabilitation services was 11.4% for patients with irreversible bilateral vision impairment (4 of 35 patients) and 1.9% for those with unilateral impairment (2 of 108). Most patients with bilateral (31 of 34 [91.2%]) and unilateral (90 of 97 [92.8%]) impairment indicated that they were bothered by their vision impairment, and most reported difficulty with reading (33 of 34 patients [97.1%] who were bilaterally impaired vs 85 of 104 [81.7%] who were unilaterally impaired).

Conclusions and Relevance  Results of this study suggest a need to better educate ophthalmologists and residents in ophthalmology about referrals to low-vision rehabilitation services for patients with irreversible vision impairment.

The prevalence of irreversible vision impairment is expected to double in the United States by the year 2050 from 1.8 million in 2017 to 3.3 million in 2050.¹ The public health burden is substantial because irreversible vision impairment is associated with decreased physical and psychological health,^2,3 reduced employment opportunity,^4,5 and difficulties in performing daily activities.^6,7 African Americans are disproportionately affected by irreversible vision impairment, with its prevalence in this population double that of whites.^8,9

Vision rehabilitation is the primary treatment option for patients with irreversible vision impairment.¹⁰ It comprises many services,¹¹ including eye examination, visual function assessment, fitting of and training with optical aids, psychological and social services, home visits, fitness to drive evaluation/rehabilitation, and employment counseling. It also includes interventions to improve orientation and mobility, eccentric viewing, scanning, and technology accessibility. Randomized clinical trials indicate that low-vision rehabilitation services can be efficacious for patients by improving their reading ability, visuomotor skills, and visual information processing; reducing their risk of anxiety and depression; and increasing their use of optical aids.^12-20

Despite growing evidence supporting the effectiveness of vision rehabilitation and the availability of these services in the United States¹¹ and other countries,^21-24 barriers to care exist. Some ophthalmologists do not routinely refer patients to low-vision rehabilitation services. Reasons for nonreferral include a lack of knowledge about the existence of low-vision rehabilitation services; the belief that these services are not effective; misunderstanding that only patients who are “legally blind” would qualify for or benefit from the services; and inadequate familiarity with the American Academy of Ophthalmology Preferred Practice Pattern for vision rehabilitation.^25-28 Patient beliefs are also barriers to care and include cost, unavailable transportation, long distances to clinics, poor understanding of low-vision rehabilitation services, feeling that their physician did not communicate the benefits of vision rehabilitation, not identifying themselves as someone with low vision, and viewing these low-vision rehabilitation services as being only for persons who are completely blind.^29-32

This study reports the rate of referral to low-vision rehabilitation services for patients with irreversible vision impairment in a publicly funded, safety-net ophthalmology clinic primarily serving uninsured African American patients. Demographic characteristics, depressive symptoms, health literacy, and cognitive status as well as patients’ knowledge, attitudes, and beliefs about low-vision rehabilitation are described.

This study was conducted from June 20, 2016, to January 31, 2017, in the ophthalmology clinic at Cooper Green Mercy Health Services, an outpatient, county-funded facility in Birmingham, Alabama, and serving adult residents of Jefferson County regardless of the ability to pay for medical services. Approximately 70% of the patients at the clinic have no health insurance.³³ Third-year ophthalmology residents and attending ophthalmologists from various subspecialties staff the clinic. The institutional review board of the University of Alabama at Birmingham approved the study. The study followed the tenets of the Declaration of Helsinki.³⁴ Participants provided written informed consent after the nature of the study was described.

Persons eligible for enrollment were those with irreversible visual impairment defined as visual acuity of 20/60 or worse in 1 or both eyes that was not correctable via medical, surgical, or refractive intervention. For analytic purposes, the group was divided into patients with impairment of 1 eye (unilateral impairment) vs both eyes (bilateral impairment). All eligible patients during clinic days were identified through the electronic health record (EHR) and were invited to enroll by a coordinator. Enrollment took place from June 20, 2016, to January 31, 2017. Ophthalmologists in the clinic were aware that a study was ongoing, but they were unaware of the study topic. Ophthalmic diagnoses, insurance status, and visual acuity were obtained from the EHR. All questionnaires were administered to the patient by an interviewer at the clinic visit after the patient had seen an ophthalmologist. A review of the patient demographics included age, sex, race/ethnicity, educational level, and employment status. Knowledge, attitudes, and beliefs about visual rehabilitation and barriers to care were collected from the questionnaire. Section 1 of the questionnaire addressed whether (1) the patients regarded themselves as having vision impairment; (2) they were aware of eye care services called vision rehabilitation or low-vision rehabilitation services; (3) the physician or clinic staff referred them for low-vision rehabilitation services; (4) the physician or clinic staff had previously discussed that these services could be helpful; (5) the patients would consider having a vision rehabilitation appointment; and (6) the patients had knowledge of common low-vision devices. Two items from the Behavioral Risk Factor Surveillance System Vision Module³⁵ were administered asking the patients about their difficulty with recognizing a friend from across the street and in reading printed material. Section 2 of the questionnaire consisted of statements about what the physician had explained to the patient concerning vision rehabilitation, with the patient indicating whether the statements were true or false on a 5-point scale.

Screening questionnaires were administered to assess symptoms of depression, health literacy, and cognitive status in this population. Depression was assessed by the Patient Health Questionnaire–9,³⁶ which asks patients to indicate whether 9 symptoms of depression bothered them over a 2-week time (where 0 indicates not at all; 1, several days; 2, more than half of the days; and 3, nearly every day). Items are summed to create the total score. A tenth item, not incorporated into the scoring algorithm, asked patients how any of the 9 endorsed items made it difficult for the patient to perform work-related activities, to complete activities of daily living, and to form relationships with other people. The Rapid Estimate of Adult Literacy in Medicine, Revised (REALM-R)^37,38 is a word recognition test that was used to screen patients for health literacy problems. The test examines how well patients read words commonly encountered in a clinic setting or words they are expected to understand during the physician-patient interaction. The score is reported as the number of words correctly read of 8 words. Cognitive status was assessed using the Short Orientation-Memory-Concentration Test,^39,40 a 6-item screening test assessing cognitive domains named in its title. Each item is scored and weighted; all items are summed to create a total score ranging from 0 to 28. Higher scores reflect worse performance; scores ranging from 0 to 8 indicate normal cognitive status or minimum impairment.

The primary outcome was whether the ophthalmologist had made any notations in the EHR indicating a patient referral to vision rehabilitation for that clinic visit. After administration of the questionnaires, the EHR pertaining to that visit was reviewed to obtain this information.

Demographic and vision characteristics as well as results from the depression, health literacy, and cognitive status instruments were summarized and were compared for those patients with irreversible bilateral and unilateral impairment. Results were summarized regarding the EHR documentation of the referral for low-vision rehabilitation services and the knowledge, attitudes, and beliefs questionnaire. Statistical analyses were performed using SAS, version 9.4 (SAS Institute Inc). Analysis of variance was used to compare continuous variables between groups; the χ² test or Fisher exact test were used to compare categorical variables. A 2-sided P < .05 was considered statistically significant.

A total of 143 patients with vision impairment in 1 or both eyes enrolled in the study from June 20, 2016, to January 31, 2017 (Table 1). Participation rate was 90.0% of patients meeting eligibility requirements and enrolled in the study. Of those enrolled, 35 (24.5%) had irreversible bilateral vision impairment, with a mean visual acuity of 20/150 in the better eye and 20/470 in the worse eye; 108 (75.5%) had irreversible unilateral vision impairment, with a mean visual acuity of 20/30 in the better eye and 20/160 in the worse eye. Acuity could not be measured in 24 patients (16.8%) because of the finding of no light perception on examination or 1 eye with an ocular prosthesis. Diagnoses for patients with irreversible vision impairment as listed in the EHR are in Table 2. Retinal (50 patients [35.0%]) and glaucoma-associated (56 [39.2%]) disorders were the most frequent causes of low vision. Among 35 persons with irreversible bilateral impairment, 4 (11.4%) were referred to low-vision rehabilitation services per the EHR; among 108 persons with irreversible unilateral impairment, 2 (1.9%) were referred.

Of 143 patients enrolled, 68 (47.6%) were women; the mean (SD) age was 55.4 (11.1) years (range, 27-89 years) (Table 1). Most participants were African American (123 [86.0%]), and the highest educational attainment level was a high school diploma or lower for 95 [66.4%]). At the time of the interview, 123 participants (86.0%) were of working age (<65 years), 92 (64.3%) were unemployed, and 88 (61.5%) were uninsured. College education or higher was noted in 18 patients (51.4%) with bilateral impairment compared with 30 (27.8%) with unilateral impairment (P = .03). Age, sex, race/ethnicity, employment, and insurance status were similar between the 2 groups. Both groups had mean scores from the Patient Health Questionnaire–9 suggesting mild depression.³⁶ A higher proportion of patients with irreversible bilateral vision impairment (17 [56.7%]) compared with unilateral impairment (35 [39.3%]) reported that the symptoms endorsed in this questionnaire made it difficult for them to engage in daily activities, but these differences were not statistically significant. Health literacy as assessed by the REALM-R was moderately limited in both groups. The Short Orientation-Memory-Concentration mean scores indicated that both groups had mental status results within normal limits or minimal impairment. Self-reported function, as assessed by the Behavioral Risk Factor Surveillance System Vision Module items on task difficulty, indicated that most participants with irreversible bilateral vision impairment had difficulty recognizing a friend across the street (33 of 34 [97.1%]) and reading printed material (33 of 34 [97.1%]). Nearly two-thirds of patients (69 of 108 [63.9%]) with irreversible unilateral vision impairment reported difficulty recognizing a friend across the street, and most (85 of 104 [81.7%]) had difficulty reading printed material.

Most participants with irreversible bilateral vision impairment considered themselves to have impairment defined as eyesight problems that are not correctable with glasses or contact lenses (34 of 35 [97.1%]) (Table 3). Of these, 31 (91.2%) reported that this impairment bothered them. Results were similar for those with irreversible unilateral vision impairment, with 97 of 108 (89.8%) considering themselves as having vision impairment and, of these, 90 (92.8%) indicating that it bothered them. Patients with bilateral impairment were more likely to have heard of these services than those with unilateral impairment (12 of 35 [34.3%] vs 6 of 108 [5.6%], P < .001). Twelve patients with bilateral impairment indicated that a physician or clinic staff person discussed how low-vision rehabilitation services may be helpful; of those, 7 reported that they were referred. Most patients with irreversible vision impairment, whether bilateral (34 [97.1%]) or unilateral (102 [94.4%]), responded that they would consider a vision rehabilitation appointment if it would help them with their everyday activities.

When asked about various low-vision assistive devices, persons with bilateral and unilateral impairment were similar; most persons had heard of large-print books (28 of 35 patients [80.0%] with bilateral impairment vs 77 of 108 [71.3%] with unilateral impairment) and magnifiers (30 [85.7%] vs 98 [90.7%]). Lower percentages of patients had heard of other assistive devices, such as talking books, miniature telescopes, special lamps for glare, glasses with colored lenses to reduce glare, and blood glucose measurement devices; participants with bilateral and unilateral impairment had similar percentages (Table 3). Compared with patients with unilateral impairment, those with bilateral impairment were more likely to have heard about specialized computer software (14 of 35 patients [40.0%] with bilateral impairment vs 17 of 108 [15.7%] with unilateral impairment), mobility training (25 [71.4%] vs 36 [33.3%]), closed circuit television (8 [22.9%] vs 10 [9.3%]), and bioptic telescopes for driving (5 [14.3%] vs 4 [3.7%]).

Table 4 presents results from section 2 of the knowledge, attitudes, and beliefs questionnaire. Results were similar between both groups on most items. Most patients reported that they had not been informed by the physician or staff member about low-vision rehabilitation services; this was more likely the case for those with unilateral than bilateral impairment (81 of 108 patients [75.0%] with unilateral impairment vs 21 of 35 [60.0%] with bilateral impairment). Most patients, regardless of impairment, replied false to the following statements: (1) the physician or clinic staff had indicated that there are devices that help them to cope with their vision problems, (2) the state vocational rehabilitation service might help with employment, (3) the state has free visual rehabilitation services for qualifying adults, and (4) the physician explained the legal ramifications of their vision impairment. Most patients of both groups were interested in learning how low-vision rehabilitation services may be able to help with their activities of daily living (32 [91.4%] with bilateral impairment vs 90 [83.3%] with unilateral impairment) and wanted to know what options they have to improve their ability to perform visual activities of daily living (32 [91.4%] vs 89 [82.4%]).

In a publicly funded, safety-net ophthalmology clinic serving adult patients, only 11.4% of patients with irreversible bilateral vision impairment were referred for low-vision rehabilitation services as documented in the clinic EHR. Self-reports by the patients via questionnaire about referrals were similarly low. This outcome is concerning because most patients (>90%) indicated that their vision impairment was bothersome, they had difficulty recognizing a friend across the street and reading printed material, and they were interested in learning how low-vision rehabilitation services may help with their visual activities.

Findings were similar for patients with irreversible unilateral vision impairment. More than two-thirds of patients knew that they were visually impaired and reported that it was bothersome. They expressed having difficulty recognizing a friend across the street and reading printed material, and they indicated willingness to learn more about low-vision rehabilitation services. Very few patients (1.8%) with irreversible unilateral vision impairment were referred to vision rehabilitation per the EHR. One might argue that referral to low-vision rehabilitation services is not appropriate because these patients have 1 “good” eye. Yet patients with monocular vision impairment experience disturbances in stereo-depth perception, visual field constriction, postural stability, and binocular inhibition (vision with both eyes is worse than with the better-functioning eye).^41-44 As our data suggest, many individuals cite difficulties with visual activities, such as recognizing people at a distance and reading printed material, which is consistent with previous work showing that those with irreversible unilateral vision impairment have decreased vision-targeted, health-related quality of life.⁴⁵ Although little research has examined the efficacy of vision rehabilitation for unilateral vision impairment, there is interest in offering such services and establishing their effectiveness.^46-48 Conditions causing unilateral vision impairment (retinal and glaucomatous disorders) in these individuals may also cause bilateral vision impairment with high risk of eventual impairment in the remaining good eye.

It is difficult to compare our result of a low rate of rehabilitation referral for persons with irreversible bilateral impairment (11.4%) with many earlier studies^25-27,29-32 because of substantive differences in study design, yet 2 studies can be compared because of similarities. Mwilambwe et al³¹ reported that 71% of visually impaired patients were aware of low-vision rehabilitation services; of these persons, 81% reported having a vision rehabilitation appointment. Kumar et al²⁷ reported that 42% of patients with low vision were referred to vision rehabilitation. Our finding of a low rate of referral for vision rehabilitation in a mostly uninsured, African American patient population is striking. These results, combined with population-based studies suggesting that vision impairment is more likely in those who are poor, uninsured, insufficiently educated, and African American,^8,9,49,50 raise concern about possible health disparities for vision rehabilitation care in the United States.

Study results suggest that improvements are needed in how ophthalmologists communicate with patients about the subject of low vision. More than half of the patients indicated that they were not informed about how assistive devices may help compensate for low vision. More than 80% indicated that the physician did not explain that the state of Alabama has a free visual rehabilitation program^51,52 and that the state vocational rehabilitation office offers employment counseling and retraining. The latter is particularly relevant because most participants were of working age (<65 years [86.0%]) and unemployed (64.3%). Results suggest that the legal ramifications of irreversible vision loss were not adequately addressed. Most participants reported that their physician did not discuss whether they met the state vision requirements for driving licensure and/or whether they met the Social Security Administration’s definition of legal blindness. Research is clear that access to vision rehabilitation is critical for visually impaired patients to maintain independence and quality of life.^12-20 The American Academy of Ophthalmology’s recently published Vision Rehabilitation Preferred Practice Pattern⁵³ states, “All ophthalmologists who see patients who report difficulty with visual tasks…should ‘recognize’ and ‘respond’ by advising the patient that vision rehabilitation is an option,”^53(p236) and further states that “Ophthalmologists are encouraged to have these conversations with their patients and refer them to vision rehabilitation.”^53(p236) Given the widespread implementation of the EHR in the United States, an automatically generated EHR notification (“flag”) for a patient with irreversible vision impairment could be helpful in facilitating the referral by prompting the ophthalmologist to consider whether a referral for vision rehabilitation is indicated.

Our results suggest that the participants were mildly depressed. It is well established that vision impairment in adults increases the risk for depression^54,55; however, other variables that increase the risk of depression, such as low educational attainment,⁵⁶ unemployment,⁵⁷ and lack of health insurance,⁵⁸ were characteristic of our sample. Although cognitive impairment is more common among older adults with irreversible vision impairment,⁵⁹ our sample of visually impaired patients had either normal or only minimally impaired cognitive status. This level of cognitive status also enhances the likelihood that they could benefit from vision rehabilitation interventions if they had been referred.⁶⁰ Health literacy was limited in our sample, which was not surprising because lower educational attainment (66.4% of participants did not complete high school or were high school/General Education Development graduates) and African American race/ethnicity (86.0%) are risk factors for lower health literacy.⁶¹ Safety-net health centers⁶² serve patients who are among the most vulnerable in our society because they are more likely to have lower income, be racial/ethnic minorities, lack health insurance, and have lower health literacy.

To our knowledge, this is the first study to examine referral rates of low-vision rehabilitation services based on the EHR in the United States for patients with irreversible bilateral and unilateral visual acuity impairment. Our findings are limited because they are based on a single clinical setting with unknown generalizability to other clinics, including those clinics serving patient populations covered by health insurance. A recent survey evaluated ophthalmologists who completed a fellowship specializing in glaucoma diseases and who work in academia or private practice. The survey results reported that only 22% of the ophthalmologists referred more than 5 patients per month to low-vision rehabilitation services and highlighted the need for these physicians to improve their familiarity with the Vision Rehabilitation Preferred Practice Pattern. In our study, vision impairment was only defined by visual acuity measurements. The study does not address ophthalmologist referrals for other types of vision impairment, nor does it provide information about whether patients, if referred, would have attended appointments for low-vision rehabilitative care; that is a question for future research. Most patients were uninsured; thus, ophthalmologists in this clinic may not have referred patients for vision rehabilitation because of cost; however, low-vision rehabilitation services are available without cost to Alabama residents through state programs and 2 area clinics. The physicians may have discussed vision rehabilitation with patients who have irreversible bilateral vision impairment but forgot to document the encounter in the EHR, and/or they may have discussed vision rehabilitation at a previous clinic visit. However, only 7 of 35 patients responded on the questionnaire that they were ever referred for vision rehabilitation services, a similar number to that documented in the EHR.

Referrals for low-vision rehabilitation services occurred at a low rate, which was coupled with patient reports that the ophthalmologist did not discuss vision rehabilitation. Clinical trials support the effectiveness of vision rehabilitation in improving quality of life for adults with low vison,^12-20 and the position of the American Academy of Ophthalmology^53,63 is that referral for vision rehabilitation is standard of care for those patients with irreversible vision impairment who are having functional difficulties. Our findings highlight the need for improved education of ophthalmologists and ophthalmology residents about referral for low-vision rehabilitation services for these vulnerable patients.

Accepted for Publication: January 16, 2018.

Corresponding Author: Cynthia Owsley, PhD, Department of Ophthalmology, School of Medicine, University of Alabama at Birmingham, 700 S 18th St, Ste 609, Birmingham, AL 35294 (owsley@uab.edu).

Published Online: March 15, 2018. doi:10.1001/jamaophthalmol.2018.0241

Author Contributions: Ms Huisingh and Dr Owsley had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Coker, McGwin, Swanson, Dreer, Owsley.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Coker, McGwin, Dreer, Owsley.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Huisingh, McGwin.

Obtained funding: Owsley.

Administrative, technical, or material support: Read, Gregg, Owsley.

Study supervision: Owsley.

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Dr Owsley reported being the principal investigator on a cooperative agreement from the Centers for Disease Control and Prevention to her institution (The University of Alabama at Birmingham) and reported receiving research funding through her institution from The EyeSight Foundation of Alabama and Research to Prevent Blindness. No other disclosures were reported.

Funding/Support: This research was funded by cooperative agreement 5U58DP002651 from the Centers for Disease Control and Prevention. Supplemental funding was provided by Research to Prevent Blindness and The EyeSight Foundation of Alabama.

Role of the Funder/Sponsor: The funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The findings and conclusions in this article are those of the authors and do not necessarily reflect the official position of the Centers for Disease Control and Prevention.