Children with glaucoma should be provided with an active voice in their care to reduce the possibility of neglecting their glaucoma as teenagers, orthoptist LACHLAN KNIGHT explains.
Adelaide-based researchers have published the world’s first qualitative study detailing the child’s perspective of what living with childhood glaucoma is like.
The project, led by orthoptist and Flinders University PhD candidate, Lachlan Knight, marks a milestone in the childhood glaucoma research space, as children have become active partners in the research process and were given a platform to voice their concerns.
The study builds upon previous works by the team at the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG).
Glaucoma is a diagnostic term all too often associated with the ageing population, resulting in little attention to the childhood form. Although rare, affecting approximately 1 in 30,000 children in Australia, childhood glaucoma contributes to about 7% of childhood vision impairment worldwide.
With a diagnosis at any time from birth to 18 years, the condition can pose substantial visual and psychosocial challenges. These challenges were discussed by 18 children aged between eight and 17 years in the Flinders interview study.
More than half of the children interviewed stated they felt anxious when performing ophthalmic tests, such as the visual field test or intraocular pressure test. This is because they were often afraid that their glaucoma may have gotten worse.
In addition, many children were frustrated because of the blurred vision brought on by pupillary dilatation, stating that “everything is blurry for six or seven hours”. This was particularly problematic for children when they returned to school after their appointment.
Clinicians should consider recommending that children undergoing cycloplegia consider bringing a pair of magnifying spectacles to assist with reading, rather than sunglasses for anticipated symptoms of glare.
These experiences, however, were typically offset by children considering that they were ‘friends’ with their orthoptist or ophthalmologist, highlighting the value of creating a safe and friendly space for children at their appointments. All children further expressed resilience in the clinical setting.
Outside of the clinical setting, 40% of children struggled with feeling misunderstood by their fellow peers because they had a rare condition. This highlighted the ongoing need to raise awareness that glaucoma can indeed occur in children.
As one study participant said, “When I try to explain [that I have glaucoma], no one understands and I have to keep explaining, explaining and explaining.”
The study further observed a distinct shift in the childhood experience of glaucoma as a child entered adolescence. Teenagers often expressed that they disengaged from their glaucoma care and did not want to attend ophthalmic appointments.
Teenagers further started to consider what glaucoma meant for their adult life. They discussed issues with their career options, obtaining a driver’s licence, and whether they would pass on their glaucoma to future children. The study warned that the cumulative influence of these issues may lead teenagers to neglect their glaucoma care.
To reduce the chance of this, a key recommendation of the study was that children should be provided with an active voice in their care. Encouraging shared parent-child glaucoma management as soon as the child reaches an appropriate level of maturity was further considered beneficial.
Future research endeavours include evaluating the most effective strategies to facilitate a child’s transition from adolescent to adulthood ophthalmic services. A multidisciplinary model of care is currently proposed, which posits orthoptists and ophthalmologists as the primary personnel in their care, with secondary involvement from specialists in the areas of genetics, psychology and general medicine.
This project forms one of many orthoptist-led projects undertaken by the ANZRAG team. Other published research describes the impact on adults with childhood glaucoma, and the caregiver. The team is also working to validate the world’s first questionnaire which can measure quality of life in childhood glaucoma.
This project was supported by the Australian National Health and Medical Research Council Centres of Excellence Grant (GNT1116360), Orthoptics Australia Research Grant, Flinders University Cross College Grant and Flinders Health and Medical Research Institute Higher Degree by Research Grant. The project received the Emmie Russell prize for best research paper by a recently graduated orthoptist at the 77th Orthoptics Australia Annual Conference.
Article reference: Knight et al. Quality of life in children with glaucoma: a qualitative interview study in Australia. BMJ Open. Published online 2022 July 21. doi: 10.1136/ bmjopen-2022-062754
ABOUT THE AUTHOR: Lachlan Knight is an Orthoptist who specialises in paediatrics and genetic eye disease at Flinders Medical Centre and the Women’s and Children’s Hospital, Adelaide. He is also undertaking his PhD in the genetics of childhood glaucoma at Flinders University.
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