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Mohammad Tallouzi, Jonathan M Mathers, David J Moore, Philip Ian Murray, melanie Calvert, Alastair K Denniston; Outcomes important to patients with Posterior Segment-Involving Uveitis. Invest. Ophthalmol. Vis. Sci. 2019;60(9):6696.
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© ARVO (1962-2015); The Authors (2016-present)
Uveitis, a group of disorders characterised by intraocular inflammation, causes 10–15% of total blindness in the developed world. The most sight-threatening forms of uveitis are those affecting the posterior segment of the eye known as posterior-segment involving uveitis (PSIU). Numerous different outcomes have been used in clinical trials evaluating alternative treatments for PSIU that may not represent patients’ and carers’ concerns. Therefore, the aim of this study is to understand priorities and perspectives of adult patients and carers with PSIU.
Four focus group discussions were undertaken to understand priorities and perspectives of adult patients and their carers. Participants were grouped according to whether or not their uveitis is complicated by the sight-threatening condition uveitic macular oedema (UMO). Discussions were audio recorded, professionally transcribed and analysed using the framework analytical approach. Ethical approval was obtained from the National Research Ethics Service (Reference 17-WM-0111).
Focus group data were analysed to infer outcomes and outcome domains that are relevant to patients with PSIU and their carers. A broad range of issues related to participants experience with PSIU and PSIU treatments were discussed in the groups. Analysis of these data demonstrates that the impact of PSIU is considerable and holistic in nature. For example, participants discussed aspects of visual function and outcomes; related physical components of PSIU; broader functional outcomes; psychological and emotional considerations and several other components of health-related and generic quality of life. Further, discussion included aspects related to disease activity and treatment related outcomes.
Collected data reflects patients’ and carers’ perspectives in the assessment of PSIU with and without macular oedema. These data demonstrate that, depending on the treatment or intervention concerned, outcome assessment may need to be diverse, incorporating visual and quality of life outcomes. This may need to be the case if outcome assessment is to adequately represent the patient and carer experience of PSIU.These data provide the basis for further reflection on these issues, for example, via the construction of a core outcome set which is the next step in this project, or via comparison with the content of outcome measures used in existing PSIU clinical research.
This abstract was presented at the 2019 ARVO Annual Meeting, held in Vancouver, Canada, April 28 - May 2, 2019.
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