Research Provides New Insights into Childhood Glaucoma

According to a new Flinders University study, glaucoma patients in children and teens grow emotionally and socially resilient to deal with this rare chronic eye disease.

However, more can be done with researchers looking at feedback from 18 young people on the difficulties brought on by childhood glaucoma, both visual and non-visual.

According to Flinders ophthalmology experts in a recent paper published in BMJ Open, telling their side of the story can assist define methods of support and tactics to improve their life both inside and outside of a therapeutic setting.

"The study raises important implications for how we engage and empower children in their eye care so that they are ready and confident to manage their condition on their own," says lead researcher Lachlan Knight, from the Flinders Health and Medical Research Institute at Flinders University.

"Navigating childhood and adolescence with a rare eye condition, attending multiple appointments, and missing school can be tough for children because their peers may not understand what they are going through. Children, and most often teenagers, do worry about their glaucoma and how it will impact on their future, in particular career choices, getting a driver's license and navigating adult eye care without their parent or guardian,” Mr. Knight added.

The pediatric type of glaucoma receives little attention because it is frequently linked to the aging population. A diagnosis of childhood glaucoma can be made at any age, from birth to 18 years. Although uncommon, affecting roughly 1 in 30,000 kids in Australia, it accounts for 7% of all childhood vision impairment globally.

Participants were quoted as saying: "When I try to explain [that I have glaucoma]—no one understands and I have to keep explaining, explaining, and explaining," and "I can't actually join the Army, because of my lack of vision… It sucks, because now I don't actually have a plan for my life."

Despite the fact that children with glaucoma shown a high level of resilience, adapting to their visual limitations in the classroom and other contexts, the study makes the following recommendations: 

- The need to develop interventions that improve a child's ability to manage their condition so that they develop the necessary skills to overcome any challenge that comes their way now and in the future.

- Clinicians are encouraged to provide children with an active voice in their care and direct questions towards them instead of their parent or guardian.

According to the study, students could easily keep up with their homework thanks to the usage of laptops and vision aides in the classroom and frequently regarded their ophthalmologist as a "friend."

Over the past two years, the South Australian researchers have spoken with 100 people affected by childhood glaucoma and are almost done establishing the first quality of life measure for those with the disease.

The tool will assist a multidisciplinary style of care that includes ophthalmology, genetics, social work, and psychology in the clinical and research setting.