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Characteristics of Low-Vision Rehabilitation Services in the United States
Cynthia Owsley, PhD, MSPH;
Gerald McGwin Jr, MS, PhD;
Paul P. Lee, MD, JD;
Nicole Wasserman, MPH;
Karen Searcey, MSPH
Arch Ophthalmol. 2009;127(5):681-689.
ABSTRACT
Objectives To describe characteristics of services, providers, and patients in low-vision rehabilitation entities serving adults in the United States.
Methods Entities (excluding Veterans Affairs clinics) were identified through professional associations, Web searches, and a telephone survey to retina practices. A census obtained information on entity types, provider types, rehabilitation services available, and clientele. Surveys were administered by telephone, fax, e-mail, or mail, whichever was preferred by the respondent.
Results A total of 1228 low-vision rehabilitation service entities were identified, with 608 surveyed (49.5% response rate). Almost half (42.7%) were private optometry practices. State agencies had the highest number of clients per week (45.0 clients per week) whereas private optometry practices had the lowest (4.1 clients per week). Most ( 88.0%) established rehabilitation goals, fit optical aids with basic training, and conducted eye examinations. Scanning, eccentric viewing, orientation and mobility, and advanced device training were less commonly offered (25%-50% of entities). Central vision impairment was the most common deficit (74.1% of clients), with age-related macular degeneration being the most common cause (67.1%). Among the clients, 85.9% had problems reading and 67.7% had problems driving; 44.9% had adjustment disorders. Almost 1 in 3 clients was aged 80 years or older.
Conclusion This census for the first time characterizes usual-care low-vision rehabilitation services in the United States for nonveteran adults.
INTRODUCTION
A pressing public health challenge for the United States is the large number of persons with eye conditions for which there are no or only minimally effective treatment options for reversing vision impairment. Although there is no universally accepted definition of the term low vision, an often-used definition is visual acuity worse than 20/60 with best refraction and/or field loss of less than 10° from fixation.1 Estimates suggest that approximately 1.5 to 2 million Americans have low vision by this definition.2 However, these estimates are subject to debate with estimates ranging from several hundred thousand to 13 million, largely depending on the methodological characteristics of studies providing these estimates.3-7 Vision impairment is among the top 10 causes of disability in the United States.8 In addition to causing difficulty in performing everyday activities, vision impairment is associated with loss of personal independence, depression, transportation challenges, difficulty in maintaining employment, placement in long-term care, and increased mortality risk.9-12
Rehabilitation is the primary treatment option for persons with low vision. Low-vision rehabilitation can encompass many types of services, including but not limited to an eye examination with assessment of visual function, prescription and training in the use of optical aids and other devices, training in adaptive skills for performing everyday activities, psychological services, and vocational counseling and training.13-14 Given the diversity of services, there is a broad range of professionals involved in their delivery, including ophthalmologists, optometrists, psychologists, social workers, and many types of rehabilitation specialists (eg, vision rehabilitation teachers, occupational therapists, certified low-vision specialists, orientation and mobility specialists, vocational rehabilitation specialists).
Unfortunately, there is little sound scientific evidence on the effectiveness of low-vision rehabilitation service models that could be used to guide decisions about how to enhance the likelihood of positive outcomes.15-16 Clinical trials have been rare, and those that do exist either have focused on service models available to veterans through the US Department of Veterans Affairs17 or have evaluated delivery approaches used by other countries.18 To our knowledge, no clinical trial has focused on the effectiveness of service models available to adults living in the United States who are not eligible for veterans' health care. Before such a trial can be designed, a clear understanding is needed about what services are available in the United States. While the literature contains descriptions of the general types of services available19-20 and accounts of specific programs21-22 in the United States, there has yet to be a comprehensive characterization of what services are actually available throughout the country.
Here we describe the results of a census of clinics and agencies in the United States providing low-vision rehabilitation services to adults (outside of the Department of Veterans Affairs health system). These entities were surveyed with respect to characteristics of the services, the providers, the clientele served, and their geographic distribution.
METHODS
This study was approved by the institutional review board of the University of Alabama at Birmingham. The population of low-vision rehabilitation service entities to be surveyed was identified in several ways: (1) Web sites of service organizations (American Foundation for the Blind, Lighthouse International, the Low Vision Gateway) listed resources in the United States for persons with low vision; (2) the American Academy of Ophthalmology Web site listed ophthalmologists specializing in low-vision rehabilitation, and the Vision Rehabilitation Committee of the American Academy of Ophthalmology also sent us a list of physicians specializing in low vision; (3) the American Academy of Optometry Web site listed diplomates in low vision, and the American Academy of Optometry also provided a list of optometrists affiliated with the low-vision section; (4) the American Occupational Therapy Association provided a list of members indicating vision impairment as a practice specialty; (5) the Association for the Education and Rehabilitation of the Blind and Visually Impaired provided a list of members in the following divisions: low vision, orientation and mobility, rehabilitation teaching, employment services, psychosocial services, and business enterprise program; (6) ophthalmology practices specializing in the retina in the United States (identified through the American Academy of Ophthalmology Web site) were surveyed and asked where they refer visually impaired patients for visual rehabilitation services; and (7) a Google search for entities providing low-vision rehabilitation services was performed using key words "low vision," "low-vision rehabilitation," and "visual rehabilitation." Because the unit of observation for this census was the entity, not the individual provider within an entity, duplicate listings defined as those having the same address were removed. For example, an optometrist and an occupational therapist could each have been identified through the process described, but they work at the same service entity.
A survey was developed to address several domains of interest, including the type of service entity (eg, private practice, state agency), types of providers offering low-vision rehabilitation services at the entity (eg, ophthalmologists, optometrists, various types of vision rehabilitation specialists), types of services provided at that service entity, characteristics of clients, and operational issues (eg, hours of operation, number of clients seen per week). The survey was pilot tested on 10 low-vision rehabilitation service entities, and feedback was used to enhance the clarity of items and response options. The survey is available at http://www.eyes.uab.edu/tools.
Telephone administration of the survey began January 2, 2007, but after 6 months it was recognized that this approach provided a low yield. The survey was then mailed to all of the remaining potential respondents who were given the option of returning the completed survey by regular mail (a prestamped self-addressed envelope was enclosed), fax, requesting an electronic copy of the survey by e-mail and then returning the completed survey via e-mail, or requesting that the survey be conducted via telephone. If a survey recipient did not respond, a repeat mailing was done 1 month after the original mailing and then was done again if there was still no response. Completed surveys were accepted until December 31, 2007.
Descriptive statistics (eg, means, proportions) were used to characterize low-vision rehabilitation service entities with respect to services provided, service providers, clientele served, and the geographic distribution of these clinics and agencies. For client characteristics (eg, demographics, types of vision impairment, causes of vision impairment), descriptive statistics were weighted by the number of clients as indicated by the survey respondent.
RESULTS
The census enumerated a total of 1504 entities in the United States. After attempting to contact each entity, it was determined that 28 had disconnected or wrong telephone numbers with no forwarding number available and 248 indicated that they did not currently provide low-vision rehabilitation services. Six hundred eight of the 1228 remaining entities completed the survey, yielding a response rate of 49.5%. The person who completed the survey on behalf of the service entity was most commonly an optometrist or ophthalmologist (76.8%), with the balance being various types of vision rehabilitation professionals or administrative personnel. Eighty-eight of those contacted entities declined participation and 532 provided no response. Based on the names of these entities, we determined that of those who declined or provided no response, 59% were private optometry practices, 13% were private ophthalmology practices, and the rest for the most part were independent services for visually impaired persons and state agencies.
Table 1 indicates that almost half of the entities surveyed were private optometry practices (42.7%), with the next most common types being private ophthalmology practices (17.4%) and independent agencies for visually impaired persons (11.2%). University-based ophthalmology services and university-based optometric services were about equally represented (3.5% and 2.9%, respectively). Government agencies (the vast majority were state agencies) represented 7.5% of respondents. Although general hospitals and rehabilitation hospitals or outpatient centers were represented, they each represented 2.6% or less of all entities. Of all service entities surveyed, 20% said they had an academic affiliation.
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Table 1. Percentage of Each Entity Type Offering Specific Services
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Also provided in Table 1 are the characteristics of services offered when the entities are considered altogether and when they are stratified by entity type. Nearly all of the entities had procedures for establishing the client's rehabilitation needs and goals (96.5%), offered optical aid fitting, dispensing, and basic training in their use (92.0%), and provided ocular examination with visual function evaluation (87.7%). Two entity types less likely to provide ocular and visual function examination were government agencies and independent services for visually impaired persons (53.1% and 61.6%, respectively). Other types of services were not as universally offered among entities as those just mentioned. Overall, about half offered intensive or advanced training in optical aid use (45.6%) and training in eccentric fixation or preferred retinal loci (51.4%). Those entities most likely to provide these services were rehabilitation and general hospitals and outpatient rehabilitation centers; the least likely to provide these services were private optometry and ophthalmology practices. About one-fourth to one-third of entities offered home visits, orientation and mobility instruction, support group programs, psychological counseling, and social work services. Those entities most likely to provide these services were rehabilitation hospitals, outpatient rehabilitation centers, independent services for visually impaired persons, and government agencies; the least likely were private optometry and ophthalmology practices. When all of the entities were considered together, they rarely offered driving rehabilitation (11.4%), computer or accessible technology training (3.7%), or employment counseling (1.8%). Of the entities, 89.6% reported that if a client is deemed in need of services not offered at their own entity, they refer the client to external entities.
Table 2 provides information on the percentage of entities with at least 1 staff member working full-time or part-time in each professional category listed. Among the entities, 79.6% had an optometrist and 18.8% had an ophthalmologist providing low-vision rehabilitation care. Rehabilitation teachers and orientation and mobility instructors were employed at 22.7% and 20.4% of service entities, respectively, and occupational therapists were employed at 15.1%. Psychologists and vocational or employment counselors had low representation (4.9% and 5.8%, respectively). Occupational therapists were not very common when entities were considered as a whole (15.1%); however, they were relatively frequent providers at rehabilitation hospitals (70.0%), outpatient rehabilitation centers (70.6%), general hospitals (47.1%), and university-based ophthalmology practices (47.8%). Rehabilitation teachers were often providers at independent services for visually impaired persons (69.9%) and government agencies (67.4%) and were infrequently providers at private optometry practices (7.5%), private ophthalmology practices (9.6%), and university-based ophthalmology practices (8.7%). Vocational or employment counselors were relatively rare at all types of entities except for government agencies (51.0%). Psychologists were relatively infrequent at all types of entities except for rehabilitation hospitals (30.0%).
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Table 2. Percentage of Each Entity Type With Specific Types of Low-Vision Rehabilitation Providers
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Only 1 low-vision rehabilitation professional was on staff ("solo" provider) in 40.1% of entities (Table 3). Approximately half of private optometry and ophthalmology practices had solo providers, whereas the other types of entities were much more likely to have a team of providers (2 low-vision rehabilitation providers working in a single entity). For those entities having more than 1 professional on staff, the professionals meet as a team to discuss management and care of most clients in 59% of these entities. The professional with whom clients were most likely to have their first interaction at the entities was an optometrist.
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Table 3. Entities Where the Provision of Low-Vision Rehabilitative Care Is by a Solo Providera
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On average, service entities were open for client services 4 days per week. Services were provided 5 days per week in 65% of entities surveyed; at 11.6% of service entities, services were provided only 1 day per week. When an appointment was requested, most service entities (71%) were able to schedule a client within 2 weeks of the call and 92% were able to schedule a client within 4 weeks. Most clients (76.6%) were seen within 15 minutes of arrival. Figure 1 shows how the average client volume per week varies with each service entity type. Government agencies saw the largest number of clients per week (45.0 clients per week), which was approximately twice as many as the service entities with the next highest volume (ie, independent services for visually impaired persons, outpatient rehabilitation centers, university-based optometry practices). University-based ophthalmology practices, rehabilitation and general hospitals, and other entities saw approximately a dozen clients per week. Private ophthalmology and optometry practices saw the fewest clients per week (5.4 and 4.1 clients per week, respectively).
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Figure 1. Self-reported weekly client volume according to entity type.
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Based on the client volume per week for each service entity category and the percentage of each entity type surveyed, we estimated the proportion of clients receiving low-vision services as a function of service entity type (Figure 2). Approximately half of those receiving low-vision services do so at government (state) agencies (28.4%) or independent services for visually impaired persons (22.7%); the next largest provider types were private optometry practices (14.7%) followed by other provider types (8.4%) and private ophthalmology practices (7.9%). The remaining entities provided services to fewer than 5.0% of low-vision clients seeking them.
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Figure 2. Proportion of low-vision clients receiving services according to entity type.
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When entities were considered together, most clients (69.6%) were aged 60 years or older and more than one-quarter (28.7%) were aged 80 years or older (Table 4). The largest racial/ethnic group was white (67.5%) followed by African American (17.9%) and Hispanic (9.1%). Clients were more likely to be women (60.4%) than men. About two-thirds of clients (66.5%) had Medicare as health insurance or third-party coverage. Although rare, a few service entities (7 of 508 service entities responding to this item) indicated that they provide all services free of charge, so health insurance status was irrelevant and thus they did not ask about it. Ophthalmologists were the primary referral source for all types of entities, with almost half of the clients referred by them. The vast majority of entities (87.2%) reported that clients came to their appointments accompanied by family or friends always or most of the time. Services at 38.9% of the entities could be provided in a language other than English.
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Table 4. Demographic and Other Characteristics of Clients Stratified by Entity Type
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The most common type of vision impairment in clientele of the surveyed entities was central vision impairment (74.1% in all of the entities) (Table 5). On average, 67.1% of clients had a diagnosis of age-related macular degeneration. Although the other chronic eye conditions of aging were represented, they were much less common than age-related macular degeneration. Of the problems the clients had when they sought rehabilitation, reading difficulties were most common (85.9%), and difficulties in writing, driving, and other near and distance tasks were also encountered by more than half of the clients. Nearly half of the clients (44.9%) were characterized as having problems with emotional or psychological adjustment. These findings are for the most part reflected by percentages for specific types of service entities.
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Table 5. Visual Characteristics of Clients Stratified by Entity Type
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Figure 3 presents the density of service entities per 1 000 000 population for each state. It should be noted that the data in Figure 3 are not limited to those service entities that participated in the survey; rather, they represent all of the identified service entities excluding those that indicated they no longer provide low-vision rehabilitation services. There was a high density of service entities in the plains and mountain states as well as in New England; the density of service entities was low across southeastern and southwestern states.
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Figure 3. State-specific density (entities per 1 000 000 population) of low-vision entities.
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COMMENT
Here we report the results of the first census of entities providing low-vision rehabilitation services in the United States (outside of services available through the Veterans Administration) with respect to characteristics of services, providers, clientele served, and geographic distribution. The 49.5% response rate is comparable to or higher than that in previous surveys where eye care providers were respondents.23-28
Almost half of service entities providing low-vision rehabilitation services in the United States are private optometry practices (42.7%). Although they are the most common type of service entity, private optometry practices have the lowest client volume, averaging about 4.1 per week. Earlier work suggests that this stems from many of these practices providing low-vision rehabilitation on a part-time basis only rather than being practices solely or mostly dedicated to rehabilitative care.26, 28 The services provided at these practices mostly consist of ocular examination and visual function evaluation combined with optical aid fitting and basic training in aid use, and they rarely include orientation and mobility training, psychological and social work services, driving rehabilitation, and home visits. The types of services provided by private ophthalmology practices are very similar to those provided by private optometry practices, although private ophthalmology practices represent a lower percentage of the service entities in the United States providing low-vision rehabilitation (17.4%) as compared with private optometry practices. However, ophthalmologists as a group make about half of the referrals to low-vision rehabilitation; this is more than any other service provider, including optometrists, who make about 11% of the referrals.
In contrast to private optometry and ophthalmology practices, nonfederal government agencies (eg, state services for visually impaired persons) are less common (7.5%) among entity types in the United States but have the highest patient volume of all entity types, providing care on average for 45.0 clients with low vision per week. A high percentage of government agencies provide orientation and mobility training, psychological or support group services, and home visits as compared with other types of service entities. The most comprehensive array of services for persons with low vision is offered at rehabilitation hospitals, outpatient rehabilitation centers, and independent services for visually impaired persons. These types of service entities, in addition to offering the basic services of ocular examination as well as optical aid fitting and introductory training, very frequently offer advanced forms of visual rehabilitation such as intensive training in device use, orientation and mobility training, scanning training, psychological services and support groups, and home visit programs. It is interesting that although rehabilitation hospitals and outpatient rehabilitation centers offer an impressive menu of low-vision rehabilitation services to visually impaired clients, they are rather uncommon in the United States, each representing less than 5.0% of service entities providing low-vision rehabilitation services.
Our results suggest that the core or basic services offered by almost all entities, regardless of type, consist of identifying rehabilitation needs, conducting an ocular and visual function evaluation, and fitting, dispensing, and providing introductory training for optical aids. Less commonplace, although provided by about one-third to one-half of entities, are intensive training in device use, scanning training, home visits, orientation and mobility training, and support groups. It is interesting that although respondents indicated that on average almost half of clients had psychological or emotional adjustment problems, fewer than one-quarter of entities provided psychological services and fewer than 5.0% had psychologists on staff. This observation is consistent with previous reports that even though adjustment disorders and depression are pervasive among visually impaired persons, entities often do not offer psychological services as part of a comprehensive set of services on site.29-31 This is in contrast to rehabilitation service models for other types of disability (eg, spinal cord injury, stroke, traumatic brain injury) where a psychologist is a key member of the on-site multidisciplinary care team.32-33 Driving rehabilitation is also poorly represented among services at entities, available at only 11.4% of entities surveyed. However, survey respondents indicated that driving difficulties are present in about two-thirds of clients served by their agency or clinic. Driving is the primary mode of personal transportation in the United States, and lacking a driver's license has negative personal consequences for health and well-being.34 Jurisdictions are increasingly allowing licensure for visually impaired persons who do not meet the vision standard (eg, 20/40) if they can demonstrate safe driving skills through an on-road evaluation by a driving rehabilitation specialist.
It is widely accepted that the goal of low-vision rehabilitation is to assist patients in effectively using their residual vision to facilitate their performance of visual tasks important to everyday life, thereby enhancing quality of life. Vision rehabilitation professionals such as rehabilitation teachers, occupational therapists, orientation and mobility specialists, low-vision therapists, and teachers of visually impaired persons are the professionals who mainly work with the visually impaired client to develop new performance strategies and to adapt familiar ones. Thus, it is interesting that about 63% of entities describing themselves as providing low-vision rehabilitation services did not report having professionals in any of these categories as part of their on-site care teams. However, this does not necessarily mean that clients do not eventually receive such services. About 90% of surveyed entities reported that they refer clients out for services not provided at their own clinic or agency, although our survey cannot establish what types of services these precisely are.
Three-quarters of clients who are served by low-vision rehabilitation entities in the United States mainly have central vision impairment, with the balance having peripheral vision problems or combined central and peripheral vision problems. This result, along with the result that two-thirds of clients have age-related macular degeneration, is consistent with what is currently known about the epidemiology of eye disease in adults in the United States.35 However, it is important to recognize that a nontrivial percentage of clients—about 25%—have peripheral vision problems; thus, the need for improved rehabilitative strategies for this population cannot be ignored, especially given the importance of peripheral vision for mobility9 and higher-order visual processing skills.36-37
We underscore the finding that almost 1 in 3 persons seeking low-vision rehabilitation is aged 80 years or older. These are individuals who in addition to their vision impairment are likely to have other aging-related impairments (physical, cognitive) and medical comorbidities. Persons aged 80 years or older are at high risk for depression, being caregivers, and having inadequate social support. For all of these reasons, the optimal rehabilitative care strategies for adults in their 80s are likely to be different, at least in part, than for adults in their 60s or younger. It remains unknown to what extent existing low-vision rehabilitation models of care are effective for the oldest-old in our population, who represent a very large segment of those seeking low-vision rehabilitation services.
There was a distinct geographic pattern of service entities across the United States with a higher density of entities on a population basis in the mountain and plains states such as Montana, Wyoming, and Nebraska as well as in New England. Conversely, across the southern United States from Georgia to Arizona and extending to California, there was a lower density of service entities on a population basis. The reason for this pattern is not entirely clear. One possible explanation is that those states with the highest density have more of their population in need of such services, namely older adults. However, when the rates were calculated accounting for state-to-state differences in age distributions, the state rankings were largely unchanged.
A major strength of this study is that to our knowledge it provides the first national picture of the characteristics of low-vision rehabilitation services for adults in the United States not eligible for veterans' health care. To identify the population to be surveyed, we carried out a very comprehensive search using multiple sources. Limitations must also be acknowledged. The survey response rate was 49.5% even with the use of multiple strategies for administering the survey. At the same time, it is important to emphasize that our response rate was comparable to or higher than the response rates for other well-designed surveys of eye care providers.23-28 The distribution of service entity types for nonresponders was very similar to the distribution of those who responded, suggesting no obvious bias in the types of service entities completing the survey. This survey did not delve into providers' practices and patterns of referring clients to services external to the entity; this topic is being addressed in a second survey currently under way.
To conclude, this census contributes to the understanding of characteristics of usual care in the United States for low-vision rehabilitation services available to nonveteran adults. This information can be used to guide the design of clinical trials on the effectiveness of low-vision rehabilitation for adults and to prompt closer scrutiny as to whether client needs are being adequately met by current models of care delivery.
AUTHOR INFORMATION
Correspondence: Cynthia Owsley, PhD, MSPH, Department of Ophthalmology, School of Medicine, University of Alabama at Birmingham, 700 S 18th St, Ste 609, Birmingham, AL 35294-0009 (owsley{at}uab.edu).
Submitted for Publication: August 28, 2008; final revision received November 6, 2008; accepted November 10, 2008.
Financial Disclosure: None reported.
Funding/Support: This work was supported by grants R21-EY16801 and R21-EY14071 from the National Eye Institute and by the EyeSight Foundation of Alabama, Research to Prevent Blindness, Inc, and the Alfreda J. Schueler Trust.
Author Affiliations: Departments of Ophthalmology (Drs Owsley and McGwin and Mss Wasserman and Searcey) and Surgery (Dr McGwin), School of Medicine, and Department of Epidemiology, School of Public Health (Dr McGwin), University of Alabama at Birmingham; and Duke University Eye Center, Durham, North Carolina (Dr Lee).
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SECTION EDITOR: PAUL P. LEE, MD
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Reading Rehabilitation of Individuals with AMD: Relative Effectiveness of Training Approaches
Seiple et al.
IOVS 2011;52:2938-2944.
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