Quality of Life in Adults with Childhood Glaucoma: An Interview Study

Lachlan S W Knight; Bronwyn Ridge; Sandra E Staffieri; Jamie E Craig; Mallika Prem Senthil; Emmanuelle Souzeau

doi:10.1016/j.ogla.2021.09.007

Quality of Life in Adults with Childhood Glaucoma: An Interview Study

Ophthalmol Glaucoma. 2022 May-Jun;5(3):325-336. doi: 10.1016/j.ogla.2021.09.007. Epub 2021 Sep 23.

Authors

Lachlan S W Knight¹, Bronwyn Ridge², Sandra E Staffieri³, Jamie E Craig², Mallika Prem Senthil⁴, Emmanuelle Souzeau²

Affiliations

¹ 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.
² Department of Ophthalmology, Flinders University, Flinders Medical Centre, Bedford Park, Australia.
³ Department of Ophthalmology, Royal Children's Hospital, Parkville, Australia; Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, East Melbourne, Australia; Ophthalmology, University of Melbourne, Department of Surgery, Parkville, Australia.
⁴ Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Bedford Park, Australia.

PMID: 34562634
DOI: 10.1016/j.ogla.2021.09.007

Abstract

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.

Keywords: Childhood glaucoma; Glaucoma; Interviews; Qualitative; Quality of life.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Australia
Female
Glaucoma* / psychology
Humans
Male
Middle Aged
Qualitative Research
Quality of Life* / psychology
Registries