When Treatment Fails: Title and subTitle BreakCaring for Patients With Visual Disability

Despite significant advances in the understanding and treatment of oculardiseases over the past decade, the prevalence of severe vision loss throughoutWestern society as a consequence of age-related macular degeneration, diabeticretinopathy, and glaucoma is increasing.¹ Inthe United States alone, more than 1 million Americans 40 years and olderare legally blind, and an additional 2.4 million Americans are consideredvisually impaired.² These figures will increaseas the number of Americans 40 years and older doubles in the next 30 years.² While ophthalmologists are keenly aware of the effectsof ocular diseases on vision, impairment of sight is often the first of manyproblems that confront our patients following the onset of severe ocular disease.

Less apparent to ophthalmologists than loss of sight, however, are thesecondary effects of vision loss, which are not primarily ophthalmic in nature.These effects include depression, functional limitations, lower quality oflife, psychological distress, and disability. Numerous studies^{3 - 5} haveindicated that severe vision loss is associated with high levels of emotionaldistress and reduced quality of life, primarily through its disabling effectson the ability of patients to perform activities of daily living. One reportdocumented a 33% rate of clinical depression in patients with bilateral visionloss from age-related macular degeneration,³ twicethe rate observed in previous studies of elderly populations without maculardegeneration.⁴ Depression seems to furthercompromise visual function in patients with macular degeneration,³ giving rise to a cycle of greater visual disabilityand depression. Even in those patients without clinical depression, the psychosocialimpact of vision loss is profound. Persons with diseases such as glaucomaand macular degeneration manifest low quality-of-life measures and high emotionaldistress scores on standardized questionnaires, comparable with scores ofindividuals with chronic illnesses such as AIDS and chronic obstructive pulmonarydisease.⁵ In addition, 79% of persons withcomorbid medical problems reported that vision loss was their worst medicalproblem.⁵

Finding suitable employment can be a problem for visually impaired individualswho desire to work. Among visually impaired individuals between the ages of21 and 64 years, only 41.5% are employed.⁶ Notonly does visual impairment affect patients' employment opportunities, italso may hinder their ability to care for themselves. In fact, vision lossis the third most common chronic condition requiring need for assistance inactivities of daily living for patients older than 70 years, ranking behindarthritis and heart disease.⁷ These data buttressthe commonly held belief that vision loss is a multifaceted problem affectingmany aspects of patients' lives.

Against this complex backdrop, the ophthalmologist is left wonderingwhat can be done to help patients for whom no ophthalmic treatments remain.While ophthalmologists are not likely to personally offer support servicessuch as counseling or grief management to patients with visual impairment,they may still mitigate the effect of vision loss and assist their patientsby directing them to health care providers who offer such resources. In particular,ophthalmologists must be vigilant in recognizing clinical depression amongpatients with low vision from any cause. Patients manifesting signs or symptomsof depression should be referred for psychiatric or psychological evaluationand treatment as appropriate. In addition, ophthalmologists should be conscientiousin initiating low-vision rehabilitation evaluation as patients encounter theprogressive effects of debilitating ocular disease.

Inasmuch as the need for evaluation and treatment of psychiatric diseasesuch as clinical depression is undeniable, the need for vision rehabilitationof visually impaired patients is equally compelling. The benefits of visionrehabilitation, long known to both physicians and patients, are now becomingdemonstrable quantitatively. Vision rehabilitation services have been documentedto improve patients' task-specific abilities, including reading duration,reading speed, and other particular functions such as reading both small andordinary print and street signs.⁸

The application of technology to the needs of the visually impairedis transforming vision rehabilitation, and creativity in the use of technologyin rehabilitation is increasing. A new universe of activity is possible forvisually impaired patients with the development of specialized computer softwareand hardware, which provides access to the Internet as well as a means tofunction in the business office environment. Other technological advancesinclude head-mounted autofocus telescopes with spectacle-mounted liquid crystaldisplays that dramatically enhance distance viewing. The high levels of patientsatisfaction derived from these and other low-vision services⁹ attestto their subjective value. Standardized vision-specific questionnaires havedocumented improvement in the overall sense of well-being and emotional healthfrom vision rehabilitation services.¹⁰ Thevalidity of the Visual Function Index for retinal disease has been demonstratedindependently.¹¹ Many vision rehabilitationcenters provide counseling, organize support groups, and facilitate accessto social services in addition to providing the necessary visual rehabilitation.

Despite the successes of vision rehabilitation, underuse of low visionservices is commonplace. While no firm statistics are available, a surveyfrom the Lighthouse for the Blind (New York, NY) suggests that only 1% ofthose with a self-reported vision problem were referred for vision rehabilitation.More important, only 10% to 21% of all such individuals reported any awarenessof services available to them.⁶ A variety offactors have contributed to this underuse in the past, including lack of coverageby Medicare and other insurers. In May 2002, Medicare coverage for low-visionrehabilitation was approved by the Centers for Medicare and Medicaid Services(Washington, DC), thus eliminating a major obstacle in the path of rehabilitation.Ophthalmologists' relative insensitivity to the needs of patients and ignoranceof the opportunities and services now available may still present barriersto patients. A more aggressive referral pattern by ophthalmologists acrossthe country will likely lead to greater access by patients.

In conclusion, patients with visual disabilities face tremendous needsbeyond the specific medical issues pertaining to their ophthalmic care. Ourresponsibilities as ophthalmologists should not end with the last photodynamictherapy session or panretinal laser treatment. Ophthalmologists can spearheadefforts to heighten awareness and utilization of vision rehabilitation andother support services in our patients with visual disabilities. Through awillingness to refer patients for vision rehabilitation and attentivenessto psychosocial problems, we still can contribute to our patients' well-beingeven when further ophthalmic treatment is untenable.

Correspondence: Dr Gieser, 2015 N Main St, Wheaton, IL 60187 (jgieser@wheatoneye.com).

The author has no relevant financial interest in this article.