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Abstract #95772 Published in IGR 22-3
Quality of Life in Adults with Childhood Glaucoma: An Interview Study
Knight LSW; Ridge B; Staffieri SE; Craig JE; Prem Senthil M; Souzeau EOphthalmology. Glaucoma 2022; 5: 325-336
PURPOSE: To explore and report on the quality-of-life (QoL) issues encountered by adults with childhood glaucoma. DESIGN: Exploratory qualitative study. PARTICIPANTS: Forty-seven participants with childhood glaucoma (defined as disease onset <18 years) recruited from the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG). METHODS: A qualitative research methodology (interpretive phenomenology) was applied, and data were collected through semistructured in-depth interviews. NVivo-12 software (QSR International Pty Ltd) was used to inductively analyze and code data to identify QoL themes pertinent to the cohort studied. MAIN OUTCOME MEASURES: Quality-of-life themes and subthemes. RESULTS: Mean participant age was 40.0 ± 15.3 years, and 55% of participants were female. We identified 10 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 affected by feelings of being misunderstood because of 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 an inability to fulfill parental duties. This often led to genetic counseling-seeking behaviors. Mobility issues were infrequently experienced. CONCLUSIONS: Childhood glaucoma poses a substantial impact to the emotional well-being of adults with the condition, which is mediated by the use of coping strategies. Genetic counseling and family planning options may 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.
Department of Ophthalmology, Flinders University, Flinders Medical Centre, Bedford Park, Australia; Department of Ophthalmology, Women's and Children's Hospital, North Adelaide, Australia. Electronic address: Lachlan.WheelhouseKnight@flinders.edu.au.
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