Visual Impairment: Understanding the Psychosocial Impact

An Expert Interview With Khadija S. Shahid, OD, FAAO

Steven Fox

October 29, 2012

Editor's note: Loss of vision not only presents difficult physiologic challenges, it can also exact significant psychosocial costs.

During a highlighted session at the 2012 American Academy of Optometry annual meeting, held in Phoenix, Arizona, Khadija  S. Shahid, DO, FAAO, who is clinical assistant professor of ophthalmology at the University of Iowa in Iowa City, gave attendees practical advice on how to recognize and manage psychosocial problems associated with visual impairment.

In an email interview with Medscape Medical News, Dr. Shahid discussed some of the main points from her presentation.

Medscape: What psychological and psychosocial problems do you see most often in patients facing loss of vision?

Dr. Shahid: By far the most common psychological comorbidity of vision loss is depression. According to the Preventing Depression in Age-Related Macular Degeneration (AMD) trial [Arch Gen Psychiatry. 2007;64:886-892], 30% of patients with AMD will experience depression within a few months of their second eye becoming affected. In patients with diabetes mellitus, depression has been linked to increased hyperglycemic episodes, increased vascular complications (including sight threatening diabetic retinopathy), and even increased mortality.

There are also social manifestations such as higher rates of unemployment and divorce. It's not uncommon for patients to report fear and anxiety related to the anticipation of future vision loss or blindness and phobic anxieties, such as fear of open spaces, traveling in crowded areas, and being left alone.

[Consider the] experiences [of people with] glaucoma or diabetic retinopathy who present with nonspecific complaints of eye pain. On thorough examination, we find no corresponding pathology or organ damage. That sort of eye pain may be a manifestation of somatization — a coping mechanism to the psychosocial stress of vision loss.

These kinds of problems don't necessarily present in the patients you'd expect. A patient with unilateral AMD who maintains near-normal vision in 1 eye will likely have greater emotional distress at slight changes in visual status than a patient who is legally blind with bilateral AMD. It is the anticipation of future blindness that creates this high-anxiety state.

Medscape: How do psychological comorbidities affect adherence to prescribed treatments?

Dr. Shahid: Patients with glaucoma and depression are less likely to use prescribed eye drops as instructed, and patients undergoing laser photocoagulation for diabetic retinopathy are more likely to associate this treatment with pain and, therefore, be less likely to return for follow-up care. Yet we know that when patients are compliant — returning to physicians for follow-up care — it significantly reduces their risk for visual impairment and blindness.

Medscape: What role do socioeconomic, age, and other factors associated with vision loss play?

Dr. Shahid: Economics, race, culture, and spiritual/religious beliefs can all play significant roles.

Some social, cultural, and religious groups may embrace and assist visually impaired people; others may shun them and consider them a burden.

Of course, many of the psychosocial problems linked to visual impairment can be avoided if we manage to prevent or minimize visual problems through early detection and routine eye exams. For example, both glaucoma and diabetic retinopathy, commonly found in black and Latino populations, are treatable and, in most cases, will not progress to vision loss if detected early.

However, many adults with diseases associated with vision loss do not get routine eye care. That may be due to the asymptomatic nature of common ocular diseases, or it might be due to lack of access to healthcare, limited financial means, and/or lack of education regarding the importance of preventative eye care.

Medscape: How do quality-of-life issues associated with vision loss vary by age?

Dr. Shahid: Vision loss or blindness in children always raises concerns about social, emotional, and educational growth and development. Vision loss can have a detrimental effect on the building of relationships with family, friends, and society.

Consider the cultural importance of maintaining eye contact when conversing, and how we use recognition of facial expressions in silent forms of communication. A child with nystagmus or profound visual impairment will have significant challenges with these kinds of issues.

Vision loss or blindness alone should not, in and of themselves, be reasons to have lower expectations of a child's scholastic achievement. Providing the right kinds of support, along with good interventions, can ensure that a child's education is not limited by impaired vision.

Adults with vision loss face different challenges, of course; many are related to social and economic factors. Unemployment among visually impaired people tends to be twice that of fully sighted people.

People with visual impairment or blindness also tend to have fewer years of formal education, lower incomes, and increased dependence on public-assistance programs.

It is also important to consider a small but certainly significant group: military personnel returning from war zones with injuries. Up to 30% of those casualties are head and neck injuries, and many include ocular injury. These soldiers have to address not only visual trauma and traumatic brain injury, but also possible posttraumatic stress disorder.

Older adults are another challenging group. Self-reported quality-of-life scores in adults older than 70 years tend to be the lowest of all age groups. Older adults face lifestyle changes following retirement. They may experience loss of income. They face declines in physical abilities, including neurodegenerative diseases, and they have to cope with the death of spouses, family, and friends. Without proper support and rehabilitation, vision loss in this group can lead to increased dependence and burden on families, which, in turn, often leads to institutionalization of the individual.

Medscape: What special challenges does acquired vision loss present?

Dr. Shahid: Naturally, patients with congenital conditions don't tend to experience the same degree of mourning as patients who lose their sight later on. While both types of vision loss are challenging, the adjustment in acquired conditions creates unique psychosocial impact and loss.

There are obvious physical losses, such as the ability to read a book, drive a car, or orient and mobilize independently. There are also more abstract losses, such as visual proprioception, contact with the environment, light security, and the psychological associations we have with darkness (emptiness, sadness, isolation) that a profoundly visually impaired person is subjected to.

Medscape: Can standardized tests be used to assess the psychosocial impact of vision loss?

Dr. Shahid: There are numerous methods used to assess psychological profiles and health, such as the Center for Disease Control's Health-Related Quality of Life Measures, a self-reported perception of physical, mental, and social health.

There are also vision-specific tools such as the National Eye Institute Visual Function Questionnaire, which specifically measures health-related quality of life in people with visual impairment, and the Adaptation to Age-related Vision Loss Scale, a measure of psychosocial adaptation in elderly people with vision loss.

More specific tools include the Diabetes Quality of Life Scale and the Hypoglycemia Fear Survey, which has a specific index for children.

Medscape: What tools are available to manage these patients, and which work best?

Dr. Shahid: As with patients referred for rehabilitation after losing the use of a limb secondary to a stroke, patients with vision loss must be rehabilitated to function without normal vision.

This could involve referral to a low-vision practitioner, state or private agencies for the blind, or a combination of these and other professionals. The goal of low-vision rehabilitation is to optimize visual function (i.e., the ability to conduct day-to-day activities independent of visual acuity).

In addition, it's crucial to recognize and refer those in need of psychotherapy. That is important for individuals and members of their families who provide physical and emotional support.

Good interventions center on helping patients develop and maintain an optimistic outlook, helping them take a proactive approach to self-rehabilitation, and helping them achieve a sense of control over their lives.

While clinicians and patients can't completely control the course of many ocular diseases, they can control how they respond to changes. Acceptance involves a realistic understanding of what the true limitations created by vision loss actually are, and what remaining capabilities exist. It means helping patients maintain a balance between independence and assistance.

Medscape: Are pharmacologic therapies effective?

Dr. Shahid: Pharmacotherapies can be effective in addressing specific psychological diagnoses and are necessary to manage the symptoms of these diseases. However, they must be incorporated with the management strategies outlined above to address the root cause of these comorbidities.

Medscape: What about alternative therapies?

Dr. Shahid: Small-scale studies have looked at the use of techniques to mediate anxiety and depression in visually impaired individuals and have shown some success. Examples of such approaches are relaxation and meditation techniques, hypnosis, yoga, and breathing exercises.

Medscape: Do multidisciplinary approaches produce the best results for these patients?

Dr. Shahid: Yes. It takes a team approach to optimally manage patients with vision loss. Optometrists or ophthalmologists have the vital role of diagnosing and managing the causative condition. But they must also recognize when the condition has created challenges in activities of daily living and/or quality of life. This is where the low-vision team of doctors, occupational therapists, and counselors trained for mobility, vocational rehabilitation, educational intervention, and information technology, can establish training protocols to maximize visual function.

Additionally, psychotherapy intervention, with or without pharmacotherapy, can be considered; that must be communicated to the patient's primary care physician.

Finally, it is essential to enlist help from the patient's support system — family members and friends — to ensure the success of these interventions.

Medscape: Are there any other points you'd like to add?

Dr. Shahid: Most of us recognize that depression interferes with our patient's ability to function. Yet in too many cases, depression related to vision loss goes untreated.

Clinicians need to know how to recognize depression, and to whom they can refer patients, if needed. It is especially important to be aware of psychologists or psychiatrists in your local area who have experience dealing with visually impaired patients.

We also stress the importance of being familiar with your state, local, and private agencies for the blind or visually impaired, and the resources available in your community for people who can no longer drive, who need low-vision rehabilitation, or who would benefit from local support groups or national advocacy chapters.

Low-vision rehabilitation itself has an antidepressant effect. So recognition is key, referral should follow, and future management is essential as the disease progresses.

As healthcare professionals, we tend to focus on very thorough, detailed examinations, and we do this very well. It makes us great practitioners in recognizing, addressing, and treating disease immediately.

But that approach can undermine our ability to holistically heal. More and more we are recognizing the importance of stepping back and looking at the whole picture, including every system outside of the organ of damage. That includes psychological health, social health (family, friends, resources), and environmental health.

Dr. Shahid has disclosed no relevant financial relationships.