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Ophthalmologists who treat children with a diagnosis of vision loss can help with the near-term adjustment and long-term pursuit of goals by providing information about rehabilitation programs, support groups, and other resources.
Take-home message: Ophthalmologists who treat children with a diagnosis of vision loss can help with the near-term adjustment and long-term pursuit of goals by providing information about rehabilitation programs, support groups, and other resources.
By Nancy Groves; Reviewed by Janet LaBreck and C. Gail Summers, MD
There is life beyond a child ’s diagno sis of low vision or blindness.
After the diagnosis is given and a treatment plan proposed, the ophthalmologist ’ s responsibility extends to offering information to an often-devastated family about services, resources, and support systems in the community and elsewhere that can help them learn strategies for managing daily life and pursuing long-term goals.
“The ophthalmologist needs to be part of the visual rehabilitation team , because very often they are the entry point for a child with low vision, ” said C. Gail Summers, MD, a geneticist and pediatric ophthalmologist and professor, Departments of Ophthalmology and Visual Neurosciences and Pediatrics, Minnesota Lions Children's Eye Clinic, Minneapolis.
“It ’ s not just ‘ here ’ s a prescription for a pair of glasses and goodbye. ’ There ’ s a lot more to it, whether it ’ s referral to an early intervention program for a young child, writing a letter to a school so that a child can work with a teacher for the visually impaired, or referring the family to a vision rehabilitation specialist, ” Dr. Summers said.
While physicians do not necessarily need to be experts on all of the programs and services available in their communities, an ongoing partnership with local or regional agencies and community organizations is critical, concurred Janet LaBreck, commissioner, Rehabilitation Services Administration (RSA), U.S. Department of Education, Washington, D.C.
RSA’s mission is to provide leadership and resources to help states and other agencies provide vocational rehabilitation and other services to help people maximize their employment, independence, and integration into the community and the competitive labor market.
“As partners, the medical and vocational rehabilitation communities can offer a wide range of services that support the desire and need for information and help individuals and families understand that the diagnosis of a visual condition does not necessarily equal the inability to pursue life ’ s activities in a way that supports their long-term goals and objectives,” LaBreck explained.
“Beyond the diagnosis, it’s important to provide additional resources and support that patients and their families can continue to use through the education, rehabilitation, and, ultimately, employment experience,” she said.
Successful partnerships between ophthalmologists and agencies or other service providers foster better understanding of who the patients/clients are and identify mutual strategies that incorporate both health- and life-related issues that will enable individuals to pursue their goals, LaBreck added.
She suggested, for example, that physicians have an awareness of compensatory strategies for individuals who have received a diagnosis of legal blindness or low vision. Rehabilitation services typically teach such strategies and recommend readily available low- and high-tech aids and devices for managing home and workplace tasks.
“They offer everyday solutions to enable individuals to function at their maximum capacity, which can change the lives of people who are living with long-term low vision,” LaBreck said.
In some instances, though, the aids or services that a child needs could place a strain on a family ’s budget. The ophthalmologist could inform the family of potential financial support based on eligibility for receiving rehabilitation services, which could ultimately make a difference in the child’s prognosis.
Being part of a network of individuals, agencies, and services all working to help children with vision problems also helps physicians view their patients holistically instead of strictly from a medical perspective.
“This issue is important to me personally as well as professionally, because having been a consumer of the rehabilitation system as well as having been a lifelong patient of ophthalmology and optometry services, it became very clear to me that the role the medical community plays in treating patients, not only in the diagnosis but preparing for beyond the diagnosis, is a critical stepping stone to helping individuals understand and to move toward the next stage of their life, ” said LaBreck, who was diagnosed as being legally blind as a child as a result of retinitis pigmentosa.
“Additionally, it can be life changing to leave patients with a sense of hope and encouragement when the treatment plan extends to connecting them with a support system that continues beyond their relationship with the ophthalmologist, ” she continued.
The clinically related services offered to children with low vision or blindness may include not only age-appropriate examinations and routine testing, but also more specialized testing, such as an electroretinogram to determine if a child has a retinal dystrophy, or a referral to a neurologist for suspected developmental problems, Dr. Summers said.
If the medical problem appears to have a genetic basis, a referral may be made to a genetic counselor who may suggest further testing, not just for the child but for other family members and, in rare instances, enrollment in a gene therapy trial.
Often, though, ophthalmologists will be asked for advice about matters not strictly clinical, such as referrals to support groups, and may want to volunteer this information if the subject has not come up.
“Many times in my practice, I connect families where the children have the same diagnosis,” Dr. Summers said. “Often they’ve never known anyone who has that particular diagnosis as a cause of low vision. ”
She works at an academic medical center with a large patient base and a high percentage of patients with serious or rare conditions, but physicians in smaller or more isolated communities also can help patients and their families by passing on information about resources in nearby cities or online.
Ophthalmologists who can guide patients toward an array of services and information as well as provide medical care also may find that they are involved in a mutually rewarding years-long relationship with some of their patients.
Dr. Summers, who has been a pediatric ophthalmologist for more than 30 years, still sees some patients who are now adults but first arrived in her practice as young children. While they could have transferred their care elsewhere after hitting their teen or young adult years, these individuals are comfortable returning to a familiar provider who knows not just their medical history, but also much about their experiences over the years.
But whether patients are under a physician ’s care for months or years, one of the key things to remember when providing pediatric ophthalmology services is that children are not just mini ature adults, Dr. Summers said. Ophthalmologists must adjust their examination and diagnostic techniques, especially for very young children, since it may be difficult or impossible to evaluate best-corrected letter visual acuity, contrast sensitivity, or visual field in the customary manner.
Ophthalmologists also should acknowledge the role of the family.
“You’re dealing not just with the child but with the parent who has often picked up that something is not right,” Dr. Summers said. “They’re scared. They’re worried that their child might be blind, and blindness to them is a ‘lights out’ type of blindness where they see nothing, while many of the kids will have some residual vision.”
The extent to which any ophthalmologist chooses to learn about or become involved in a network of programs helping children with low vision will vary, but at a minimum practices should offer items such as brochures from rehabilitation services, lists of resources and contact information, or other material that families are likely to need as they confront new challenges.
Growth in the services and resources available and improvements in the devices and tools designed for individuals with impaired vision should be good news to ophthalmologists as well as their young patients and family members.
From her perspective of several decades in practice, Dr. Summers believes that ophthalmologists treating children with visual impairments may have more cause than ever to feel optimistic.
She has observed that children with visual impairment seem to benefit from new technology not just as learning or communications tools, but also as a means of lessening the stigma of their condition. Rather than surreptitiously pulling a large magnifier out of a pocket only when absolutely necessary, children now can relish the opportunity to use a laptop or tablet synced to the classroom’s electronic board.
“In many ways, children no longer feel different in a negative way, ” Dr. Summers said. “ They’re okay with having low vision in the classroom because of the technology that they are able to use. The self esteem is entirely different than what I saw when I was first in practice.”
C. Gail Summers, MD
Neither LaBreck nor Dr. Summers reported any relevant disclosures.