To explore and report on the quality of life (QoL) issues encountered by adults with childhood glaucoma.
Exploratory qualitative study.
Forty-seven participants with childhood glaucoma (defined as disease onset <18 years) recruited from the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG).
A qualitative research methodology (interpretive phenomenology) was applied and data were collected through semi-structured in-depth interviews. NVivo-12 software was used to inductively analyze and code data to identify QoL themes pertinent to the cohort studied.
QoL themes and subthemes.
Mean participant age was 40.0 ± 15.3 years and 55% of participants were female. We identified ten QoL themes pertinent to adults living with childhood glaucoma. Coping strategies and emotional well-being were the most prominent themes. Maladaptive coping strategies, including treatment nonadherence, were observed more commonly in individuals aged <40 years and those without a vision impairment or reviewed less regularly. Emotional well-being 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.
Childhood glaucoma poses a substantial impact to the emotional well-being of adults with childhood 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 psychosocial impact of childhood glaucoma in adults.

Copyright © 2021. Published by Elsevier Inc.