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

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: Four focus group discussions were undertaken to understand the perspectives of adult patients (n=18) and carers (n=10) with PSIU. Participants were grouped according to whether or not their uveitis was complicated by the sight-threatening condition uveitic macular oedema (UMO). 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 health care, (9) treatment burden, (10) treatment side effects, (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.Ethical approval: Ethical approval was obtained from the United Kingdom National Research Ethics Service (Reference 17-WM-0111).<br/

COSUMO: study protocol for the development of a core outcome set for efficacy and effectiveness trials in posterior segment-involving uveitis

Abstract Background Uveitis, a group of disorders characterised by intraocular inflammation, causes 10–15% of total blindness in the developed world. The most sight-threatening uveitis affects the posterior segment of the eye (posterior-segment involving uveitis (PSIU)). Numerous different outcomes have been used in clinical trials evaluating alternative treatments for uveitis, limiting inter-trial comparison and aggregation of data. We aim to develop a core outcome set (COS) that would provide a standardised set of outcomes to be measured and reported in all effectiveness trials for PSIU. Methods A three-phase design will be used informed by recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) initiative. Phase 1: a comprehensive list of outcomes will be identified through both a systematic review of effectiveness trials of PSIU and qualitative research with stakeholders. The qualitative study will comprise focus groups with patients and their carers in parallel with one-to-one telephone interviews with health professionals and policy-makers. In the focus groups, patients will be grouped according to whether or not their uveitis is complicated by the sight-threatening condition uveitic macular oedema (UMO) since it is hypothesised that the presence of UMO may significantly impact on patient experience of PSIU. Phase 2: Delphi methodology will be used to reduce the range of potential outcomes for the core set. Up to three Delphi rounds will be used through an online survey. Participants will be asked to rate the importance of each outcome on a 9-point Likert scale where 9 is most important. Phase 3: a consensus meeting will be held with key stakeholders to discuss the Delphi results and ratify the final outcomes to be included in the COS. Discussion The development of an agreed COS for PSIU would help ensure that outcomes which matter to key stakeholders are captured and reported in a consistent way. A COS for PSIU would allow greater comparison and aggregation of data across trials for the better evaluation of established and emerging therapies through evidence synthesis and meta-analysis to inform clinical guidelines and health policy. Trial registration COMET. http://comet-initiative.org/studies/details/640 . August 2015

Twenty-five years of end-user searching, Part 1: Research findings

This is the first part of a two-part article that reviews 25 years of published research findings on end-user searching in online information retrieval (IR) systems. In Part 1 (Markey, 2007 ), the author seeks to answer the following questions: What characterizes the queries that end users submit to online IR systems? What search features do people use? What features would enable them to improve on the retrievals they have in hand? What features are hardly ever used? What do end users do in response to the system's retrievals? Are end users satisfied with their online searches? Summarizing searches of online IR systems by the search features people use everyday makes information retrieval appear to be a very simplistic one-stop event. In Part 2, the author examines current models of the information retrieval process, demonstrating that information retrieval is much more complex and involves changes in cognition, feelings, and/or events during the information seeking process. She poses a host of new research questions that will further our understanding about end-user searching of online IR systems.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/56093/1/20462_ftp.pd

Periarticular analgesia for postoperative pain following total knee replacement

This is the protocol for a review and there is no abstract. The objectives are as follows: To determine the efficacy and safety of unimodal and multimodal periarticular analgesia in controlling postoperative pain following knee replacement surgery

Development of a Core Outcome Set for Clinical Trials in Non-infectious Uveitis of the Posterior Segment.

PURPOSE To develop an agreed set of outcomes known as a core outcome set (COS) for Non-Infectious Uveitis of the Posterior Segment (NIU-PS) clinical trials. DESIGN Mixed-methods study design comprising a systematic review and qualitative study followed by a two round Delphi exercise and face-to-face consensus meeting. PARTICIPANTS Key stakeholders including: patients diagnosed with NIU-PS; their caregivers; healthcare professionals involved in decision-making for patients with NIU-PS including ophthalmologists, nurse practitioners and policymakers/commissioners. METHODS A long list of outcomes was developed based on the results of (1) a systematic review of clinical trials of NIU-PS and (2) a qualitative study of key stakeholders including focus groups and interviews. The long list was used to generate a two-round Delphi exercise of stakeholders rating the importance of outcomes on a nine-point Likert scale. The proportion of respondents rating each item was calculated, leading to recommendations of 'include', 'exclude' or 'for discussion' that were taken forward to a face-to-face consensus meeting of key stakeholders at which the final COS was agreed. MAIN OUTCOME MEASURE Items recommended for inclusion in the COS for NIU-PS RESULTS: A total of 57 outcomes grouped in 11 outcome domains were presented for evaluation in the Delphi exercise, resulting in 9 outcomes directly qualifying for inclusion and 15 outcomes being carried forward to the consensus meeting of which 7/15 were agreed for inclusion. The final COS contained 16 outcomes organized into 4 outcome domains comprising visual function, Health Related Quality of Life (HRQoL), treatment side effects and disease control. CONCLUSION This study builds on international work across the clinical trials community and our qualitative research to construct the world's first COS for NIU-PS. The COS provide a list of outcomes that represent the priorities of key stakeholders and provides a minimum set of outcomes for use in all future NIU-PS clinical trials. Adoption of this COS can improve the value of future uveitis clinical trials and reduce non-informative research. Some of the outcomes identified do not yet have internationally agreed methods for measurement and should be the subject of future international consensus development. TRIAL REGISTRATION The study was registered with COMET (http://comet-initiative.org/studies/details/640)

Outcome domains and items identified from the interviews with healthcare professionals.

Outcome domains and items identified from the interviews with healthcare professionals.</p

Comparison of outcome domains and items between professional interviews, focus groups with patients and carers [11] and outcomes assessed in clinical research identified via systematic review [10].

Comparison of outcome domains and items between professional interviews, focus groups with patients and carers [11] and outcomes assessed in clinical research identified via systematic review [10].</p

Questionnaire (interviews).

BackgroundUveitis comprises a range of conditions that result in intraocular inflammation. Most sight-threatening uveitis falls into the broad category known as Non-infectious Posterior Segment-Involving Uveitis (PSIU). To evaluate treatments, trialists and clinicians must select outcome measures. The aim of this study was to understand healthcare professionals’ perspectives on what outcomes are important to adult patients with PSIU and their carers.MethodsTwelve semi-structured telephone interviews were undertaken to understand the perspectives of healthcare professionals. Interviews were audio recorded, transcribed and thematically analysed. Findings were compared with the views of patients and carers and outcomes abstracted from a previously published systematic review.ResultsEleven core domains were identified as important to healthcare professionals: (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 health care, (9) treatment burden, (10) treatment side effects, (11) disease control. Healthcare professionals recognised a similar range of domains to patients and carers but placed more emphasis on certain outcomes, particularly in the disease control domain. In contrast the range of outcomes identified via the systematic review was limited.ConclusionHealthcare professionals recognise all of the published outcome domains as patients/carers in the previous publication but with subtly differing emphasis within some domains and with a priority for certain types of measures. Healthcare professionals discussed the disease control and side effects/complications to a greater degree than patients and carers in the focus groups</div