The Impact of Adult Uveitis on Quality of Life: An Exploratory Study

ABSTRACT

PURPOSE: This exploratory qualitative research was conducted to understand the quality of life (QoL) impacts of adult uveitis to develop a uveitis QoL item bank, and we present here the results of qualitative analysis of uveitis patient experience.

METHODS: A qualitative approach with phenomenological study design was employed to explore the common QoL domains in uveitis. Data were collected using focus groups and face-to-face interviews. The sessions were audio-recorded, transcribed verbatim, and analysed thematically. NViVo software was used to perform qualitative analysis.

RESULTS: Eight focus groups and 10 interviews were conducted with 41 patients with uveitis. Seven QoL domains were identified, namely symptoms, emotional, activity limitation, health concerns, convenience, social, and economic impact. Although these QoL domains have been previously identified in other eye diseases, the sub-themes within each QoL domain were unique to uveitis. Participants described a variety of symptoms including increased light sensitivity, blurred vision, pain, redness, and tearing. Participants repeatedly described feeling frustrated due to prognostic uncertainty and associated discomfort. Participants were concerned about the frequent relapses of inflammation, as well as side-effects from long-term systemic medications. Uveitis affected their ability to perform daily tasks such as using computers, driving, and reading books. Direct financial impacts included reduced work hours and the costs of treatment and specialist care.

CONCLUSION: Participants with uveitis experience many symptoms in addition to medication-related inconveniences and activity limitations. The QoL issues identified will be used to develop a uveitis-specific QoL item bank.

KEYWORDS:

• Computerised adaptive testing
• item bank
• patient-reported outcome measures
• quality of life
• uveitis

Acknowledgments

We would like to thank all the staff of The Royal Victorian Eye and Ear Hospital, Victoria, Melbourne for supporting data collection. Our special thanks to our research assistants who helped us with conducting interviews and focus groups.

Disclosure of interest

The authors report no conflict of interest.

Additional information

Funding

This study is funded by National Health and Medical Research Council (grant no.1031838). Tasanee Braithwaite received funding from UK patient charity Olivia’s Vision as part of a Research Fellowship.