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To describe characteristics of services, providers and patients in low vision rehabilitation entities serving adults in the United States.
Entities (excluding VA 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, email, or mail, whichever preferred by the respondent.
1,228 low vision rehabilitation service entities were identified with 608 surveyed (50% response rate). Almost half were private optometry practices (42.7%). State agencies had the highest number of clients/week (45) whereas private optometry practices have the lowest (4). Most (≥88%) established rehabilitation goals, fit optical aids with basic training, and conducted eye examinations. Training in scanning, eccentric viewing, and orientation mobility and advanced device training were less commonly offered (25%–50% of entities). Central vision impairment was the most common (74.1%) deficit, with AMD the most common etiology (67.1%). Approximately 86% of clients have problems reading and 50% driving; 45% have adjustment disorders. Almost one in three clients is ≥ 80 years old.
This census for the first time characterizes usual-care low vision rehabilitation services in the U.S. for non-veteran adults.
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 degrees from fixation.1 Estimates suggest 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 wide 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 (e.g., 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 have focused either on service models available to veterans through the U.S. Department of Veterans Affairs,17 or have evaluated delivery approaches used by other countries.18 No clinical trial has focused on the effectiveness of service models available to adults living in the United States who are not eligible for veteran’s healthcare. Before such a trial can be designed, a clear understanding is needed about what services are available in the U.S. While the literature contains descriptions of the general types of services available19,20 and accounts of specific programs21,22 in the U.S., 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.
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 listing resources in the U.S. for persons with low vision (American Foundation for the Blind, Lighthouse International, the Low Vision Gateway); (2) American Academy of Ophthalmology web site listing of ophthalmologists specializing in low vision rehabilitation; the Vision Rehabilitation Committee of the Academy also sent us a list of physicians specializing in low vision; (3) American Academy of Optometry web site listing of diplomates in low vision; the Academy also provided a list of optometrists with affiliation with the low vision section; (4) 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 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; (7) a Google search for entities providing low vision rehabilitation services using key words “low vision”, “low vision rehabilitation” and “visual rehabilitation”. Since 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 above yet they work at the same service entity.
A survey was developed to address several domains of interest including the type of service entity (e.g., private practice, state agency), types of providers offering low vision rehabilitation services at the entity (e.g., ophthalmologists, optometrist, various types of vision rehabilitation specialists), types of services provided at that service entity, characteristics of clients, and operational issues (e.g., hours of operation, clients seen per week). The survey was pilot tested on 10 low vision rehabilitation service entities, and feedback was used to enhance clarity of items and response options. The survey is available at www.eyes.uab.edu/tools.
Telephone administration of the survey began in January 2007 but after six months it was recognized this approach provided a low yield. The survey was then mailed to all remaining potential respondents who were given the option of returning the completed survey by regular mail (a pre-stamped self-addressed envelope was enclosed), fax, requesting an electronic copy of the survey by email and then returning the completed survey via email, or requesting that the survey be conducted via telephone. If a survey recipient did not respond, a repeat mailing one month after the original mailing was done, and then repeated again if there was still no response. Completed surveys were accepted until December 31, 2007.
Descriptive statistics (e.g., means, proportions) were used to characterize low vision rehabilitation service entities with respect to services provided, service providers, clientele served, as well as the geographic distribution of these clinics and agencies. For client characteristics (e.g., demographics, types of vision impairment, etiology of vision impairment) descriptive statistics were weighted by the number of self-reported clients.
The census enumerated a total of 1,504 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 they did not currently provide low vision rehabilitation services. Of the remaining entities (1,228), 608 completed the survey yielding a response rate of approximately 50%. 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 entities contacted 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 and 13% private ophthalmology practices, with the rest for the most part being independent services for the visually impaired and state agencies.
Table 1 indicates that almost half of entities surveyed were private optometry practices (42.7%), with the next most common types being private ophthalmology practices (17.4%) and independent agencies for the visually impaired (11.2%). University-based ophthalmology 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/outpatient centers were represented, they each represented less than 3% of all entities. Twenty percent of all service entities surveyed said they had an academic affiliation.
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 entities had procedures for establishing the client’s rehabilitation needs and goals (96.5%), offered optical aid fitting and dispensing and basic training in their use (92.0%), and provided ocular examination with visual functional evaluation (87.7%). Two entity types less likely to provide ocular and visual function examination are government agencies and independent services for the visually impaired (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/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 like to provide these services were private optometry and ophthalmology practices. About one-third to one-fourth 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 the visually impaired and government agencies; the least likely were private optometry and ophthalmology practices. When all entities are considered together, they rarely offered driving rehabilitation (11.4%), computer/accessible technology training (3.7%), and employment counseling (1.8%). Approximately 90% (89.6%) of entities report 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 that have at least one staff member in each professional category listed, working full-time or part-time. Almost 80% of entities (79.6%) have an optometrist and 18.8% have an ophthalmologist providing low vision rehabilitation care. Rehabilitation teachers and orientation and mobility instructors are employed at approximately 20% of service entities (22.7% and 20.4% respectively), and occupational therapists at 15.1%. With low representation are psychologists (4.9%) and vocational/employment counselors (5.8%). Occupational therapists are not very common when entities are considered as a whole (15.1%), however they are relatively frequent providers at rehabilitation hospitals (70%), outpatient rehabilitation centers (70.6%), general hospitals (47.1%), and university ophthalmology practices (47.8%). Rehabilitation teachers are often providers at independent services for the visually impaired (69.9%) and government agencies (67.4%) and infrequently providers at private optometry (7.5%) and ophthalmology practices (9.6%) and university ophthalmology practices (8.7%). Vocational or employment counselors are relatively rare at all types of entities except for government agencies (51%). Psychologists are relatively infrequent at all types of entities except for rehabilitation hospitals (30%).
Only one low vision rehabilitation professional is on staff (“solo” provider) in 40.1% of entities (Table 3). Approximately half of private optometry and ophthalmology practices are solo providers, whereas the other types of entities are 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 one professional on staff, in 59% of these entities the professionals meet as a team to discuss management and care of most clients. The professional with whom clients are most likely to have their first interaction at entities is an optometrist.
On average, service entities were open for client services 4 days/week. Services were provided five days/week in 65% of entities surveyed; at 11.6% of service entities, services were provided only 1 day/week. When an appointment is requested, the majority of service entities (71%) can schedule a client within two weeks of the call, and 92% within four weeks. The majority of clients (76.6%) are seen within 15 minutes of arrival. Figure 1 shows how average client volume per week varies with service entity type. Government agencies see the largest number of clients per week (45 clients/week), which is approximately twice as many as the next highest volume service entities (i.e., independent services for the visually impaired, outpatient rehabilitation centers, university-based optometry practices). University-based ophthalmology practices, rehabilitation and general hospitals and other entities see approximately a dozen clients per week. Private ophthalmology and optometry practices see the fewest number of clients per week (5.4 and 4.1 clients/week respectively).
Based upon 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 the visually impaired (22.7%); the next largest provider type are private optometry practices (14.7%) followed by other provider types (8.4%) and private ophthalmology practices (7.9%). The remaining entities provide services to less than 5% of low vision clients seeking them.
When entities are considered together, the majority of clients are ≥ 60 years old (69.6%) and over one-quarter are ≥80 years old (28.7%) (Table 4). The largest racial/ethnicity group is whites (67.5%) followed by 17.9% African Americans and 9.1% Hispanics. Clients are more likely to be women (60.4%) than men. About two-thirds of clients have Medicare (66.5%) as health insurance/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 are the primary referral sources for all types of entities with almost half of clients referred by them. The vast majority (87.2%) of entities reported that clients always or most of the time come to their appointments accompanied by family or friends. Services at 38.9% of entities could be provided in a language other than English.
The most common type of vision impairment in clientele of the entities surveyed is central vision impairment (overall all entities, 74.1%) (Table 5). On average 67.1% of clients seen have a diagnosis of age-related macular degeneration (AMD). While the other chronic eye conditions of aging are represented, they are much less common than is AMD. Of the problems the clients have when they seek rehabilitation, reading difficulties are most common (85.9%), and difficulties in writing, driving, and other near and distance tasks are also encountered by over half of clients. Nearly half of clients (44.9%) are 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.
Figure 2 presents the density of service entities per 1,000,000 population for each state. It should be noted that the data in Figure 2 is not limited to those service entities that participated in the survey; rather, it represents all identified service entities excluding those that indicated they no longer provide low vision rehabilitation services. There is a high density of service entities in the plains and mountain states as well as in New England; the density of service entities is low across southeastern and southwestern states.
Here we report the results of the first census of entities providing low vision rehabilitation services in the U.S. (outside of services available through the Veterans Administration) with respect to characteristics of services, providers, clientele served, and geographic distribution. The 50% response rate is comparable to or higher than previous surveys where eye care providers were respondents.23–28
Almost half of service entities providing low vision rehabilitation services in the U.S. are private optometry practices (42.7%). Although they are the most common type of service entities, private optometry practices have the lowest client volume, averaging about 4/week compared to other types of entities. Earlier work suggests 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 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 of private optometry practices, although private ophthalmology practices represent a lower percentage of the service entities in the U.S. providing low vision rehabilitation (17.4%), as compared to private optometry practices. However, ophthalmologists as a group make about half the referrals to low vision rehabilitation, more than any other service provider including optometrists who make about 11% of the referrals.
In contrast to private optometry and ophthalmology practices, non-federal government agencies (e.g., state services for the visually impaired) are less common (7.5%) among entity types in the U.S. Yet they have the highest patient volume of all entity types, providing care for on average 45 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 to other types of service entities. The most comprehensive array of services for persons with low vision are offered at rehabilitation hospitals, outpatient rehabilitation centers, and independent services for the visually impairment. These types of service entities, in addition to offering the basic services of ocular examination and 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 U.S., each representing less than 5% 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, less than one-quarter of entities provide psychological services and < 5% 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 (e.g., 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% of entities surveyed. Yet 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 U.S. and lacking a 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 (e.g., 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 in order 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 the visually impaired 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 entities surveyed 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 U.S. mainly have central vision impairment, with the balance having peripheral vision problems or combined central and peripheral vision problems. This result, and the result that two-thirds of clients have AMD, is consistent with what is currently known about the epidemiology of eye disease in adults in the U.S.35 Yet it is important to recognize that a non-trivial percentage of clients – about 25% – have peripheral vision problems and 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 are ≥ 80 years old. These are individuals who, in addition to their vision impairment, are likely to have other aging-related impairments (physical, cognitive) and medical comorbidities. Persons ≥ 80 years old are at high-risk for depression, being caregivers, and having inadequate social support. For all these reasons, the optimal rehabilitative care strategies for a person 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. What explains 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 it provides the first national picture of the characteristics of low vision rehabilitation services for adults in the U.S. not eligible for veterans’ health care. In order 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 50% 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 non-responders 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 understanding characteristics of usual care in the U.S. for low vision rehabilitation services available to non-veteran 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.
This research was funded by National Eye Institute grants R21-EY16801 and R21-EY14071, the EyeSight Foundation of Alabama, Research to Prevent Blindness Inc., and the Alfreda J. Schueler Trust.