%0 Journal Article
%T Quality of Life in Adults with Childhood Glaucoma: An Interview Study.
%A Knight LSW
%A Ridge B
%A Staffieri SE
%A Craig JE
%A Prem Senthil M
%A Souzeau E
%J Ophthalmol Glaucoma
%V 0
%N 0
%D Sep 2021 23
%M 34562634
暂无%R 10.1016/j.ogla.2021.09.007
%X <B>OBJECTIVE: </B>To explore and report on the quality-of-life (QoL) issues encountered by adults with childhood glaucoma.<BR><B>METHODS: </B>Exploratory qualitative study.<BR><B>METHODS: </B>Forty-seven participants with childhood glaucoma (defined as disease onset <18 years) recruited from the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG).<BR><B>METHODS: </B>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.<BR><B>METHODS: </B>Quality-of-life themes and subthemes.<BR><B>RESULTS: </B>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.<BR><B>CONCLUSIONS: </B>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.