Outcomes important to patients with non-infectious posterior segment-involving uveitis: a qualitative study.

Tallouzi, Mohammad O, Moore, David J, Bucknall, Nicholas, Murray, Philip I, Calvert, Melanie J, Denniston, Alastair K and Mathers, Jonathan M (2020) Outcomes important to patients with non-infectious posterior segment-involving uveitis: a qualitative study. BMJ open ophthalmology, 5 (1). e000481. ISSN 2397-3269.

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Official URL: https://bmjophth.bmj.com/content/5/1/e000481

Abstract

Objective

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 non-infectious uveitis are those affecting the posterior segment of the eye, collectively known as posterior segment-involving uveitis (PSIU). Numerous different clinical outcomes have been used in trials evaluating treatments for PSIU, but these may not represent patients' and carers' concerns. Therefore, the aims of this study were to understand the impact of PSIU on adult patients' and carers' lives and to explore what outcomes of treatment are important to them.

Methods and Analysis

Four focus group discussions were undertaken to understand the perspectives of adult patients (=18) and carers (10) with PSIU. Participants were grouped according to whether or not their uveitis was complicated by the sight-threatening condition uveitic macular oedema. Discussions were audio-recorded, transcribed and analysed using the framework analytical approach. Outcomes were identified and grouped into outcome domains.

Results

Eleven core domains were identified as important to patients and carers undergoing treatment for PSIU, comprising (1) visual function, (2) symptoms, (3) functional ability, (4) impact on relationships, (5) financial impact, (6) psychological morbidity and emotional well-being, (7) psychosocial adjustment to uveitis, (8) doctor/patient/interprofessional relationships and access to healthcare, (9) treatment burden, (10) treatment side effects, and (11) disease control.

Conclusion

The domains identified represent patients' and carers' experience and perspectives and can be used to reflect on outcomes assessed in PSIU. They will directly inform the development of a core outcome set for PSIU clinical trials.

Item Type: Article
Subjects: W Public health. Health statistics. Occupational health. Health education
WW Eyes. Ophthalmology
Divisions: Ambulatory Care > Ophthalmology
Clinical Support
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Depositing User: Mrs Yolande Brookes
Date Deposited: 31 Jul 2020 15:13
Last Modified: 31 Jul 2020 15:13
URI: http://www.repository.uhblibrary.co.uk/id/eprint/3333

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