Adelaide researchers have published the world’s first study documenting the lived experience of childhood glaucoma in adults, which they hope will lead to a first-of-its-kind quality of life (QoL) tool for the rare condition.
The team, from the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG) at Flinders University, Adelaide, are putting the spotlight on childhood glaucoma to create better support systems, promote awareness and give a voice to those living with the disease.
Orthoptist and Flinders PhD candidate Mr Lachlan Knight, who led the study, said childhood glaucoma was a rare form of the disease diagnosed before someone turns 18. Living with childhood glaucoma can be challenging, but he said there was little research about how the condition may impact a person’s life.
Over the past 18 months, the ANZRAG researchers interviewed almost 50 adults with childhood glaucoma and asked them about how the condition has or has not affected their lives.
From these interviews, they reported that adults with the condition are resilient and adaptable to the challenges of living with the condition. It was also found adults form a strong bond with their ophthalmologist and often rely on family and friends for emotional and social support.
Because childhood glaucoma is rare, Knight said it was common for research participants to sometimes feel isolated and misunderstood by their friends, family, or workplace. It was also common for adults to feel worried, anxious, and protective of their eye health because they did not want their vision or intraocular pressures to change.
“The research also found that childhood glaucoma can impact on someone’s decision-making when planning to have a family, for a variety of reasons. Adults often sought genetic testing to understand their risk of passing on their glaucoma to their child, and to seek peace of mind,” Knight added.
The results of the study have been published in Ophthalmology Glaucoma, with Knight saying it is world’s first to describe the lived experience of childhood glaucoma in such detail.
Next stage of the research
From these interviews, Knight said the ANZRAG researchers are developing a questionnaire to quantitatively measure the impact of childhood glaucoma.
He said they require as many adults with childhood glaucoma as possible to complete the questionnaire so that it can be validated.
“The results of this research will help support groups and healthcare providers to better understand how to support adults with childhood glaucoma wherever they are in their journey,” Knight, who is also researching the genetics of childhood glaucoma, said.
Study eligibility
Adults (aged 18 or over) who were diagnosed with any type of glaucoma before the age of 18 years are eligible to participate in the study.
Knight said the ANZRAG would be grateful if clinicians could spread awareness of the research to their colleagues and patients. It takes 10-20 minutes to complete and is accessible to people with vision impairment or blindness. The study closes January 31, 2022.
If eyecare professionals have a patient interested in participating, or would like to hear more, tell them to contact Lachlan Knight: Lachlan.WheelhouseKnight@flinders.edu.au or +61 8 8204 6986
The research has been supported by the Australian National Health and Medical Research Council Centres of Research Excellence Grant (GNT1116360), Orthoptics Australia Research Grant, Flinders Health and Medical Research Institute Higher Degree Researcher Degree Grant and Flinders University Cross-College Research Grant.
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