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.
- public health
- treatment other
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Contributors All authors contributed to the study design. MOT is the clinical research fellow and was involved in all stages of the study design, data collection and analysis of the focus group discussions. MOT drafted the initial manuscript. MOT organised the focus group meeting. MOT and JMM facilitated the focus group discussions. AKD and PIM provided clinical advice and helped in the recruitment process. JMM made substantial contributions to the final manuscript and analysis presented. All authors have read and approved the final manuscript.
Funding This article represents an independent research project funded by the National Institute for Health Research (NIHR) under the Clinical Doctoral Research Fellowship Program.
Disclaimer The views and opinions expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Competing interests MJC receives funding from the National Institute for Health Research (NIHR) Birmingham Biomedical Research Centre, the NIHR Surgical Reconstruction and Microbiology Research Centre, and the NIHR ARC West Midlands at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Health Data Research UK, Innovate UK (part of UK Research and Innovation), Macmillan Cancer Support and UCB Pharma. MJC has received personal fees from Astellas, Takeda, Merck, Daiichi Sankyo, Glaukos, GSK and the Patient-Centered Outcomes Research Institute (PCORI), outside the submitted work.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Ethics approval Ethical approval was obtained from the UK National Research Ethics Service (NRES) West Midlands - South Birmingham Research Ethics Committee (reference 17-WM-0111).
Provenance and peer review Not commissioned; externally peer reviewed.
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