Pediatric glaucoma can have impact beyond clinical effects

After childhood glaucoma has been treated, ophthalmologists expect to follow patients for years, monitoring them for a host of anatomical problems that can affect their vision.

Take-home message: After childhood glaucoma has been treated, ophthalmologists expect to follow patients for years, monitoring them for a host of anatomical problems that can affect their vision.

Reviewed by Alana L Grajewski, MD

Miami-What happens to children treated for glaucoma as they grow older?

The short answer is that life goes on. Just like other kids, they want to be active, get an education, have a career, date, get married, and have children. But even if their glaucoma has been effectively cured, the impact lingers.

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“They have anatomical things that have followed them, and they have other baggage that has followed them,” said Alana L Grajewski, MD.

While the anatomical issues have been well studied, literature on the psychological-social burden of childhood glaucoma on children and families is limited, and these quality of life issues should be examined more formally, she said, noting that this is one goal of the Childhood Glaucoma Research Network (CGRN), an international group she helped found several years ago.

Providers need more information on the relationship between the care burden and other effects of childhood glaucoma, such as depression in caregivers and visually impaired children, she said.

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“It should be an essential part of our holistic approach to the management of glaucoma,” said Dr. Grajewski, director, Samuel and Ethel Balkan Pediatric International Glaucoma Center, Bascom Palmer Eye Institute, and professor of ophthalmology, University of Miami Miller School of Medicine.

She observed that glaucoma experts who have treated very young children and then continued to follow them for years are uniquely positioned to understand the importance of such a multifaceted approach. As part of a longstanding patient-parent-provider relationship, they have become familiar enough to be invited to graduations and weddings and may have fielded questions from now-grown patients on the risks of inherited glaucoma in the next generation.

“All of use who take care of kids see where having grown up with something that needs monitoring constantly does affect them, although not necessarily adversely,“ Dr. Grajewski said. “They look back on that experience and make decisions based on it.”

Impact beyond clinical factors

There is also an unmet need for instruments to identify the impact of childhood glaucoma beyond the strictly clinical effects.

“We’re looking for ways to evaluate this in a more constructive fashion: the process, the experience, and the outcome of the care,” she explained. “All of this you hope will reduce the physical, psychological, social, and economic consequences of childhood glaucoma for the affected individual and the caregiver.”

Through her experience treating pediatric glaucoma, Dr. Grajewski has realized that a team-based approach is most effective and efficient in providing appropriate care for young patients and their caregivers. At the Samuel and Ethel Balkan International Pediatric Glaucoma Center, glaucoma specialists partner with experts in pediatric corneal and retinal diseases and amblyopia as well as geneticists and genetic counselors to address children’s needs as they change through the years.

She also recommends support groups for young glaucoma patients, tailored to different age groups so that they can talk more freely about the most relevant topics. Middle schoolers, for instance, may want to trade tips about make-up and dating, topics their ophthalmologist would never think of or feel comfortable discussing.

Children who have been undergoing treatment or follow-up for years can also share their experiences with newly diagnosed patients and may be more persuasive than doctors, parents, or coaches in getting them to take necessary precautions, such as using protective eyewear for sports.

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“They know the drill. They’re much more sensitized to knowing that something can happen to their eyes,” Dr. Grajewski said.

At some point, patients will “graduate” from the care of pediatric providers, but young adulthood presents its own concerns, such as deciding whether to have children.

“What do we tell them about genetic testing and the risk for their children?” Dr. Grajewski asked. “They may think that they and their parents went through so much due to the glaucoma that they don’t want to subject children of their own to the same thing. It’s our job to be sensitive to those things and maybe start looking at those issues in advance or before they leave our care.”

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She also noted, however, that the management of pediatric glaucoma can diverge significantly in different countries.

It may be uncommon-for any number of reasons-for children to return to a physician or clinic for follow-up visits after their disease has been treated, and in some places growing up visually impaired can present many hardships.

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Alana L Grajewski, MD

E: agrajewski@med.miami.edu

This article was adapted from Dr. Grajewski’s presentation at Glaucoma Subspecialty Day during the 2015 meeting of the American Academy of Ophthalmology. She did not indicate any proprietary interest in the subject matter.