Lachlan S. W. Knight, Bronwyn Ridge1, Sandra E. Staffieri, Jamie E. Craig, Mallika Prem Senthil, Emmanuelle Souzeau

Purpose: To explore and report on the quality of life (QoL) issues encountered by adults with childhood glaucoma.

Methods: A qualitative research methodology was applied and data were collected through semi-structured in-depth interviews. NVivo-12 software was used to inductively analyse and code data to identify QoL themes.

Results: Forty-seven adults with childhood glaucoma were recruited from the Australian and New Zealand Registry of Advanced Glaucoma (mean age: 40.0 ± 15.3 years; 55% female). We identified 10 QoL themes pertinent to adults living with childhood glaucoma. Coping strategies and emotional wellbeing were the most prominent themes. Maladaptive coping mechanisms, including treatment non-adherence, were observed more commonly in individuals aged <40 years and those without a vision impairment. Emotional wellbeing was impacted by feelings of being misunderstood due to the rarity of the condition, being self-conscious of physical manifestations of the disease and anxiety related to possible disease progression and vision loss. The effect of childhood glaucoma on family planning formed a novel QoL theme and included worry for their child to inherit the condition and inability to fulfil parental duties. This often led to genetic counselling-seeking behaviours. Mobility issues were infrequently experienced. Conclusion: Childhood glaucoma poses a substantial impact to the emotional wellbeing of adults with child- hood glaucoma which is mediated by the use of coping strategies. Genetic counselling and family planning options may further be important. This study supports the development of a childhood glaucoma-specific patient reported outcome measure for assessment of the psycho- social impact of childhood glaucoma in adults.