Vision loss can affect oneâ€™s daily function and quality of life (QOL), but few research studies have actually looked at the impact of visual impairments on childrenâ€™s quality of life.
An Emory project aims to develop an instrument that will measure the effect of vision loss on the quality of life of children age 8 to 18.
Pictured from left to right: J. Devn Cornish, MD, professor and vice chair, Department of Pediatrics, Emory University School of Medicine; Andy Lovas, grand recorder, Knights Templar Eye Foundation; Sheila Angeles-Han, MD, MSc, assistant professor, Pediatric Rheumatology and Immunology, Emory University School of Medicine; Larry Vogler, MD, division chief, Pediatric Rheumatology and Immunology, Emory University School of Medicine; and Tim Taylor, director of marketing, Knights Templar Eye Foundation
The project is being led by Emory pediatric rheumatologist Sheila Angeles-Han, MD, MSc. Han recently received a $40,000 grant from the Knights Templar Eye Foundation to augment her work in this area. She is collaborating with pediatric ophthalmologists at the Emory Eye Center.
Currently, there are no validated questionnaires or tools to determine how children in these age groups cope with their visual impairments and the impact of vision loss on their daily lives. This knowledge can enhance physiciansâ€™ understanding of diseases that affect vision.
Susan Primo, MD
The patients seen by Emory low vision specialist Susan Primo, OD, MPH, have already exhausted most of their treatment options. They’ve completed medication regimens or had surgery to slow advanced age-related macular degeneration (AMD), a leading cause of blindness in the elderly. But still they don’t see well.
That’s where Primo comes in. At the Emory Eye Center, sheâ€™s studying whether behavioral modifications can lead to a change in brain activity to maximize use of remaining vision.
In macular degeneration, the maculaâ€”a layer of tissue on the inside back wall of the eyeballâ€”gradually deteriorates. That delicate tissue is responsible for visual acuity, particularly in the center of the retina. Central vision is needed for seeing small and vivid details such as words on a page or the color of a traffic light, which means it is vital for common daily tasks such as reading or driving.
In more than two decades of working with patients who are visually impaired, Primo realized that people typically use their peripheral vision to compensate for loss in central vision. Studies have shown that people with progressive central vision loss compensate by spontaneously adopting a preferred retinal location (PRL) that takes over responsibility for visual clarity.
But Primo and Georgia Tech psychologist Eric Schumacher wanted to know whether using these peripheral regions causes a change in how the brain is organized. Armed with Schumacher’s expertise in functional magnetic resonance imaging (fMRI) and Primo’s clinical experience, the researchers did indeed discover continued activity in the part of the brain that maps to the macula. The brain scans of people with AMD who had developed their peripheral vision showed substantially more activity than those of people who had not developed a PRL. Their study appeared in the December 2008 edition of Restorative Neurology and Neuroscience.
In a current study, Primo and Schumacher are exploring whether occupational training and biofeedback can help people with AMD focus on using good retinal cells and in turn speed up the brain’s reorganization.
“Although others have tried to study this reorganization of macular degeneration before, no one, to our knowledge, has tried to influence it,” says Primo. “Yet it’s important to begin to come up with therapies, treatments, and technology to help patients begin to use their residual vision faster and better than they could before.â€