PRACTICE: Development of a Core Outcome Set for Trials of Physical Rehabilitation in Critical Illness.

Rationale Findings from individual trials of physical rehabilitation interventions in critically ill adults have limited potential for meta-analysis and informing clinical decision-making due to heterogeneity in selection and reporting of outcomes used for evaluation. Objective The objective of this study was to determine a core outcome set (COS) for use in all future trials evaluating physical rehabilitation interventions delivered across the critical illness continuum of recovery. Methods An international, two-round, online, modified Delphi consensus process, following recommended standards, was conducted. Participants (N=329) comprised three stakeholder groups (Researchers, n=58 (18%); Clinicians, n=247 (75%); Patients and Caregivers, n=24 (7%)), and represented 26 countries and 9 healthcare professions. Participants rated the importance of a range of relevant outcomes. Outcomes included in the COS were those prioritised of "critical importance" by all three stakeholder groups. Results Survey response rates were 88% (Round 1) and 91% (Round 2). From a total of 32 initial outcomes, the following outcomes reached consensus for inclusion in the COS: Physical Function, Activities of Daily Living, Survival, Health-related Quality of Life, Exercise Capacity, Cognitive Function, Emotional and Mental Wellbeing, and Frailty. Conclusion This study developed a consensus-generated COS for future clinical research evaluating physical rehabilitation interventions in critically ill adults across the continuum of recovery. Ascertaining recommended measurement instruments for these core outcomes is now required to facilitate implementation of the COS. This article is open access and distributed under the terms of the Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0/).

Position statement on visiting in adult critical care units in the UK.

To provide nurses with an evidence-based Position Statement on the standards patients and visitors should expect when visiting an adult critical care unit in the 21st century in the UK. The British Association of Critical Care Nurses (BACCN) is a leading organization for critical care nursing in the UK and regularly receives enquiries about best practice regarding visiting policies. Therefore, in keeping with the BACCN's commitment to provide evidence-based guidance for nurses, a Position Statement on visiting practices in adult critical care units was commissioned. This brought together experts from the field of critical care nursing and representatives from patient and relatives' groups to review visiting practices and the literature and produce a Position Statement. An extensive search of the literature was undertaken using the following databases: Blackwell Synergy, CINAHL, Medline, Swetswise, Cochrane Data Base of Systematic Reviews, National Electronic Library for Health, Institute for Healthcare Improvement and Google Scholar. After obtaining selected articles, the references from these articles were then evaluated for their relevance to this Position Statement and were retrieved. The evidence suggests a disparity between what nurses believe is best practice and what patients and visitors actually want. Historically, visitors have been perceived as being responsible for increasing noise, taking up space, taking up nursing time, hindering nursing care and spreading infection. The evidence reviewed for this Position Statement suggests there are many benefits to patients and nurses from visitors. There was no evidence to suggest that visitors pose a direct infection risk to patients. Clear visiting policies based on evidence will negate arbitrary decisions by nurses regarding who can visit and will lessen confusion and dispel myths which can only bring benefits to patients, staff and organizations. To make nurses aware of the physical and psychological benefits of visiting to patients. Visitors bring a positive energy to patients and can act as advocates. They can supply nurses with vital information about patients which will enable the nurse to provide more individualized care. Being cognizant of the evidence will help nurses develop policies on visiting which are up to date for the 21st century.

Improving physical function of patients following intensive care unit admission (EMPRESS): protocol of a randomised controlled feasibility trial.

INTRODUCTION: Physical rehabilitation delivered early following admission to the intensive care unit (ICU) has the potential to improve short-term and long-term outcomes. The use of supine cycling together with other rehabilitation techniques has potential as a method of introducing rehabilitation earlier in the patient journey. The aim of the study is to determine the feasibility of delivering the designed protocol of a randomised clinical trial comparing a protocolised early rehabilitation programme including cycling with usual care. This feasibility study will inform a larger multicentre study. METHODS AND ANALYSIS: 90 acute care medical patients from two mixed medical-surgical ICUs will be recruited. We will include ventilated patients within 72 hours of initiation of mechanical ventilation and expected to be ventilated a further 48 hours or more. Patients will receive usual care or usual care plus two 30 min rehabilitation sessions 5 days/week.Feasibility outcomes are (1) recruitment of one to two patients per month per site; (2) protocol fidelity with >75% of patients commencing interventions within 72 hours of mechanical ventilation, with >70% interventions delivered; and (3) blinded outcome measures recorded at three time points in >80% of patients. Secondary outcomes are (1) strength and function, the Physical Function ICU Test-scored measured on ICU discharge; (2) hospital length of stay; and (3) mental health and physical ability at 3 months using the WHO Disability Assessment Schedule 2. An economic analysis using hospital health services data reported with an embedded health economic study will collect and assess economic and quality of life data including the Hospital Anxiety and Depression Scales core, the Euroqol-5 Dimension-5 Level and the Impact of Event Score. ETHICS AND DISSEMINATION: The study has ethical approval from the South Central Hampshire A Research Ethics Committee (19/SC/0016). All amendments will be approved by this committee. An independent trial monitoring committee is overseeing the study. Results will be made available to critical care survivors, their caregivers, the critical care societies and other researchers. TRIAL REGISTRATION NUMBER: NCT03771014.

Patient support groups: A survey of United Kingdom practice, purpose and performance.

BACKGROUND: Critical care survivors face physical, psychological and socio-economic burdens. Peer support is acknowledged as a way individuals can face, accept and overcome the challenges arising from a stressful event. We sought to examine the provision and benefits of peer support to critical care survivors in the UK. METHOD: We distributed a survey, devised by the patients and relatives committee of the Intensive Care Society and ICUsteps, to contacts in 163 UK Trusts/hospitals with critical care departments. The benefit to individuals was assessed by seeking the views of attendees of two support groups. RESULTS: A response was received from 91 (56%) of the critical care departments. Of these, 46 (48% of respondents) have patient support groups. Our analysis of comments from 30 people is that support groups greatly benefit service users and staff. CONCLUSIONS: Attendees of patient support groups gave highly positive comments about the service yet provision of patient support groups in the UK is not universal. RECOMMENDATIONS: We make a series of recommendations for consideration by UK health care providers.

Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.

PLAIN ENGLISH SUMMARY: Patient or user involvement in health research is well-established but is often limited to advising on research questions and design, leaving researchers to collect and analyse 'data' (which in this paper means written copies of interviews with patients about their experiences). We were working with sets of interviews with 1) young people with depression and 2) people with experiences of stroke. We were looking for key themes that it would be useful for the NHS to know about, and we developed short films which healthcare staff can use to think about how to make care more patient-centred. We wanted to see what user involvement in this analysis would bring, and how best to achieve it practically.After the researcher team had analysed the interviews, we ran two one-day workshops with people with relevant experience as a patient/service user or carer. We gave them some brief training in how to analyse interviews and how they might be used for improving the quality of care. Then we looked at extracts from the interviews, and discussed whether people could see the same themes as the researcher.People identified similar themes to the researcher, but also identified new details the researcher had missed. However, they felt reading large amounts of text was not the best way to use their time and experience. Instead they recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for. ABSTRACT: Background Patient or user involvement in health research is a well-established principle. However, involvement is often limited to advising on research questions and design, leaving researchers to complete data collection and analysis. Involvement in data analysis is one of the most challenging, least well-explored aspects of involvement. Qualitative interview data forms high volumes of rich, complex material which can be daunting to work with.Analysing narrative interviews with patients is central to a patient-centred quality improvement method called experience-based co-design. The analysis identifies 'touchpoints' - key moments of healthcare experiences - and leads to the production of a 'trigger film' to spark codesign discussions between patients and staff. We wanted to see what user involvement in this analysis would bring, and how best to achieve it. Methods As part of a wider secondary analysis study to create new trigger films, we re-analysed interview transcripts on experiences of young people with depression and experiences of stroke. We then ran two workshops with people with relevant lived experience, working with extracts from the same materials after brief training. Results People involved in the workshops identified similar themes to the researcher, but also brought some new insights. While they engaged easily with the materials selected, we under-estimated how much time it would take people to work through these. Discussion and sharing experiences and perspectives were highly valued in the first workshop. In the second workshop, we therefore started with group discussion, based on people's own experience, of what they thought the touchpoints would be, and later viewed a draft trigger film together to see how it compared. Conclusions Those involved felt that while analysing transcripts was possible in small quantities, it was not best use of their time. We suggest that conversation, rather than data, is at the heart of user involvement in analysis. One way to retain the value of lived experience in the analytic process, without over-burdening people with data, is to elicit user reflections on their experience at the start of analysis, and use this as a guide to direct both researcher and service user attention during the remainder of the process.

What patients do and their impact on implementation.

PURPOSE: The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes. DESIGN/METHODOLOGY/APPROACH: A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts. FINDINGS: Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became "experts by experience" through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes. RESEARCH LIMITATIONS/IMPLICATIONS: The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design. PRACTICAL IMPLICATIONS: Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement. SOCIAL IMPLICATIONS: Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers. ORIGINALITY/VALUE: Analysis of the role patients and carers in implementation and improvement.