Eye Care Quality and Accessibility Improvement in the Community (EQUALITY) for adults at risk for glaucoma: study rationale and design

Primary open angle glaucoma (POAG) is a chronic, progressive optic neuropathy characterized by changes in the optic disk, thinning of the retinal nerve fiber layer, and gradual loss of vision beginning in the peripheral field and extending to central vision in advanced disease. The prevalence of POAG increases dramatically with age, affecting more than 1.8 % of the US population over 40 but increasing to 23.2 % among African Americans and 9.4 % among Whites over the age of 75 [1]. POAG is 4–5 times higher in African Americans as compared to Americans of European descent [2, 3]. In addition, the disease progresses more rapidly and appears about 10 years earlier in African Americans [4‐10]. Given the rapid expected growth in older populations, the number of POAG cases will increase in the US by 50 % by 2020, directly effecting 3.36 million lives [1]. Given projected Medicare shortfalls and potential reductions in Medicaid coverage in the US [11], developing high-quality, cost-effective access to eye care for these individuals may become increasingly important.

The personal burden of POAG and accompanying vision impairment faced by individuals with this condition is significant and has been widely documented. Adults with POAG experience reductions in health-related quality of life and mobility problems such as ambulatory and driving difficulties [12‐18]. Persons with vision impairment, regardless of etiology, are at increased risk for depression, social disengagement, employment challenges, and problems accessing health care [19‐23]. Mortality risk is increased for persons with vision impairment [24, 25], including for those with POAG [26, 27]. Cost-effective benefits to quality of life have been reported for early detection and treatment of POAG [28‐32]. Thus, public health efforts to implement interventions for early detection and effective follow-up management of POAG are likely to improve patients’ health and well-being.

Older African Americans are less likely to receive routine, comprehensive eye care as compared to whites, during which POAG could be detected and treated in a timely fashion [33‐35], and they tend to receive fewer health care services [36]. This lack of care may contribute to their higher rates of POAG and associated vision impairment. When this population enters treatment, their POAG is often in more advanced forms accompanied by irreversible vision impairment, and thus more difficult to treat, as compared to whites. Further, socioeconomic disparities experienced by the African American population may limit their ability to receive follow-up eye care after diagnosis—a crucial factor for slowing disease progression.

Research has demonstrated that inadequate knowledge and awareness about the importance of eye care and strategies for minimizing barriers to care contribute to African Americans’ compliance problems with eye disease management plans and their low eye care utilization rate [37, 38, 23, 39‐41]. These factors include inadequate knowledge about basic symptoms, risk factors and treatments for commons eye diseases and conditions including glaucoma; lack of awareness about the importance of routine preventive care; cost for exams, co-pays, and spectacles; transportation challenges; and communication and trust issues with the doctor and staff. Over the past decade progress has been made in developing eye health education materials and interventions that have efficacy in improving their eye health knowledge and in facilitating eye care seeking behaviors. These eye health education programs are typically focused on improving knowledge and attitudes about eye health, disease and prevention, and communicating strategies to remove the perceived barriers to care [42‐45]. Two clinic-based studies involving inner-city African-Americans with diabetes who were not receiving annual eye care showed that the dilated fundus exam rate increased after distribution of educational material and telephone follow-up emphasizing the importance of annual eye care [46‐48]. A multimedia campaign in California combined with patient interaction increased the use of eye care services [49]. Here in Alabama we have shown that an eye health educational presentation whose content was targeted specifically for African Americans successfully imparted information about the importance of annual preventive care, which was retained 3–6 months later [44, 40, 50]. Thus, there is evidence that eye health educational interventions can have positive impacts on knowledge, attitudes, and beliefs about eye care and on eye health behaviors.

There are other factors that contribute to later diagnosis of POAG and under-utilization of eye care in African Americans. The number of patients requiring ophthalmic care is expected to increase by 18.1 % between 2008 and 2015, whereas the number of US ophthalmologists is expected to grow only 0.67 % in the same time period [51, 52]. The Affordable Care Act in the US was designed to increase the number of Americans with health insurance, reducing some financial barriers to glaucoma detection and treatment. However, this may also increase the demand for scarce clinical resources. Furthermore, ophthalmology practices are rarely located in rural counties of southern states where African Americans represent the majority of the population [53], thus creating further problems related to accessing ophthalmological care, including care provided by fellowship-trained glaucoma specialists.

There is considerable evidence [54‐60] that the recommended screening and follow-up protocols for managing glaucoma from the American Academy of Ophthalmology Preferred Practice Patterns (PPP) [61], which are very similar to the practice guidelines recommended by the American Optometric Association [62], are often not followed by primary eye-care providers, including both ophthalmologists and optometrists. This situation is unfortunate because optimal management of open angle glaucoma depends upon careful interval examination and documentation of ophthalmic findings with specific emphasis on monitoring the structure and function of the optic nerve in order to diagnosis the condition or to detect progressive injury [63]. Chart review studies in the US [64, 56, 58] document deficits in current care delivery compared to the PPP. While intraocular pressure (IOP) is frequently recorded, the primary areas of weakness are in the performance and/or documentation of gonioscopy, the documentation of optic nerve appearance, and the frequency of visual field testing [65, 56, 58, 64]. Although patients overall are likely to be scheduled for follow-up within PPP-recommended intervals, patients with unstable POAG, who are at higher risk of visual loss compared to those with stable POAG, are more likely to fall outside these intervals [56]. Administrative database studies in the US confirm these findings showing a large variation in practice patterns, with frequent deficiencies in gonioscopy [54, 55], recording of optic nerve structure [56, 58], visual field testing [56, 66] and frequency of follow-up visits [57]. Of note, African Americans were less likely to receive appropriate pre-operative testing as compared to whites [66]. Thus the literature strongly supports the existence of deficiencies in glaucoma management likely to dramatically reduce the ability of clinicians to detect potentially blinding progressive glaucomatous injury. It is likely that the problem is significantly worse in at-risk minority populations, such as African American individuals. Challenges in the accessibility and quality of glaucoma care have not been adequately addressed in public health initiatives and is a critical need if more effective healthcare delivery programs are to be developed in underserved settings.

Taken together, these factors suggest the consideration of an alternative model of glaucoma care in US communities with high percentages of persons at-risk for POAG, including African Americans. The use of telemedicine could conceivably be a key part of such a model. Telemedicine refers to the electronic communication of medical information from one site to another to improve a patient’s clinical health status [67]. It has been placed into practice in many healthcare fields and can increase patient satisfaction and accessibility to specialty care. By utilizing current technologies, telemedicine transmits patient data from a primary eye care clinic to another remote site for review by physicians specializing in the conditions being assessed (in the case of “teleglaucoma” programs, ophthalmologists fellowship-trained in glaucoma). The patient does not need to be seen in person by the specialist, thus making the evidence-based standards of specialty care more accessible to patients living in geographically remote areas with no specialty practice or to those with transportation challenges. The vast majority of the literature on telemedicine in ophthalmology is focused on diabetic retinopathy screening since there have been great strides in the development of non-invasive retinal imaging devices whose results can be electronically transmitted. These tests provide high levels of diagnostic reliability and ease of training of testing personnel [68‐70]. Acceptance of telemedicine for diabetic retinopathy has increased steadily around the world over the past 10 years stemming from its proven efficacy and cost-effectiveness [71‐74]. The detection and management of glaucoma also heavily relies on ocular imaging and other specialized tests whose results can be electronically transmitted. However, teleglaucoma programs have lagged somewhat behind diabetic retinopathy telemedicine programs in their development and implementation. In the past few years, there have been a handful of articles describing pilot teleglaucoma programs in various parts of the world (e.g., US, UK, Canada, Finland, Kenya, Greece, Australia) [74‐84]. This literature has largely focused on emphasizing the public health need for telemedicine services for glaucoma in rural and outlying areas, demonstrating feasibility, and the importance of multi-disciplinary collaboration among types of providers. In addition, previous attempts to use telemedicine in glaucoma care primarily utilized transmission of optic disc photos, which can give rise to problems such as inadequate quality of transmitted stereoscopic images, variations among glaucoma specialists’ subjective evaluations of images, and the high false-positive rate of some optic nerve imaging modalities [85, 78, 81, 86‐93].

Owing to these considerations, we designed and implemented a glaucoma detection and management program consisting of a community-based teleglaucoma model particularly targeted at the at-risk African American population ≥40 years old. The program is entitled Eye Care Quality and Accessibility Improvement in the Community (EQUALITY), and is described in detail in Methods. In order to evaluate this program, the following questions will be addressed: (1) What is the impact of patient education about glaucoma and the importance of routine comprehensive eye care on a patients’ knowledge about glaucoma-associated diagnoses (GAD), including glaucoma, glaucoma suspect, and ocular hypertension, adherence with recommended follow-up examinations for GAD, and adherence to filling medication prescriptions for GAD? (2) What is the level of patient satisfaction with teleglaucoma care based in the clinic in their community? (3) To what extent does the primary eye care provider follow the PPP in managing the care of those at-risk for glaucoma and those already diagnosed with glaucoma? (4) What is the extent of diagnostic agreement between the primary eye care provider and the ophthalmologist who has completed specialty fellowship training in glaucoma? (5) What is the cost-effectiveness of this telemedicine program compared to usual in-person care of a glaucoma patient by a glaucoma specialist? (6) What is the impact of the EQUALITY program in the primary eye care clinic in a large, national retailer on the rate of GAD prescriptions being filled in their pharmacy, as compared to the rate in a large national retailer with a primary care eye clinic where the EQUALITY program was not administered?