Quality of life in children and adults with childhood glaucoma: An interview study

Abstract

Purpose : The psychosocial impact of childhood glaucoma has not been well described due to the complexity, variability and rarity of the disease. We performed an exploratory qualitative study to report and compare the quality of life issues encountered by children and adults with childhood glaucoma.

Methods : A qualitative research methodology (interpretive phenomenology) was applied and data were collected through semi-structured interviews. Children (aged 8 to 17 years) and adults (aged ≥18 years) were recruited from the Australian and New Zealand Registry of Advanced Glaucoma. NVivo-12 software was used to inductively analyze and code data to identify quality of life themes.

Results : Eighteen children (mean age 12.4 ± 3.1 years; 33% female) and 47 adults (mean age 40.0 ± 15.3 years; 55% female) were interviewed. Eleven quality of life themes were identified. Coping strategies was the most prominent theme in either cohort. Shared adaptive coping strategies included peer support, resilience and having a positive relationship with the ophthalmologist. Maladaptive coping behaviors, including treatment nonadherence and clinical nonattendance, appeared to begin in children aged 13 to 17 years and were most prominent in adults aged <40 years. Adults experienced a more significant threat to emotional well-being than children which included feeling misunderstood due to disease rarity, being self-conscious of the physical manifestations of glaucoma and feeling anxious of possible disease progression. Meanwhile, children were more concerned with inconveniences related to clinic waiting times and pupillary dilatation. The effect of childhood glaucoma on family planning was a novel QoL theme in adults and included worry for their child to inherit the condition. This led to genetic counseling-seeking behaviors. Mobility issues were infrequently experienced by either cohort.

Conclusions : The psychosocial impact of childhood glaucoma extends beyond the clinical environment and is minimized by the use of coping strategies. Our data suggest that older children may require additional social and ophthalmic support as they transition into adulthood whilst genetic counseling and family planning options should be timely discussed. This study supports the development of a childhood glaucoma-specific patient reported outcome measure for assessment of the psychosocial impact of childhood glaucoma.

This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.