Patient-centred outcomes are under-reported in the critical care burns literature: a systematic review.

BACKGROUND: Developments in the care of critically ill patients with severe burns have led to improved hospital survival, but long-term recovery may be impaired. The extent to which patient-centred outcomes are assessed and reported in studies in this population is unclear. METHODS: We conducted a systematic review to assess the outcomes reported in studies involving critically ill burns patients. Randomised controlled trials (RCTs) and cohort studies on the topics of fluid resuscitation, analgesia, haemodynamic monitoring, ventilation strategies, transfusion targets, enteral nutrition and timing of surgery were included. We assessed the outcomes reported and then classified these according to two suggested core outcome sets. RESULTS: A comprehensive search returned 6154 studies; 98 papers met inclusion criteria. There were 66 RCTs, 19 clinical studies with concurrent controls and 13 interventional studies without concurrent controls. Outcome reporting was inconsistent across studies. Pain, reported using the visual analogue scale, fluid volume administered and mortality were the only outcomes measured in more than three studies. Sixty-six studies (67%) had surrogate primary outcomes. Follow-up was poor, with median longest follow-up across all studies 5 days (IQR 3-28). When compared to the suggested OMERACT core outcome set, 53% of papers reported on mortality, 28% reported on life impact, 30% reported resource/economic outcomes and 95% reported on pathophysiological manifestations. Burns-specific Falder outcome reporting was globally poor, with only 4.3% of outcomes being reported across the 98 papers. CONCLUSION: There are deficiencies in the reporting of outcomes in the literature pertaining to the intensive care management of patients with severe burns, both with regard to the consistency of outcomes as well as a lack of focus on patient-centred outcomes. Long-term outcomes are infrequently reported. The development and validation of a core outcome dataset for severe burns would improve the quality of reporting.

Rationing care by frailty during the COVID-19 pandemic.

The coronavirus disease 2019 (COVID-19) pandemic is disproportionately affecting older people and those with underlying comorbidities. Guidelines are needed to help clinicians make decisions regarding appropriate use of limited NHS critical care resources. In response to the pandemic, the National Institute for Health and Care Excellence published guidance that employs the Clinical Frailty Scale (CFS) in a decision-making flowchart to assist clinicians in assessing older individuals' suitability for critical care. This commentary raises some important limitations to this use of the CFS and cautions against the potential for unintended impacts. The COVID-19 pandemic has allowed the widespread implementation of the CFS with limited training or expert oversight. The CFS is primarily being used to assess older individuals' risk of adverse outcome in critical care, and to ration access to care on this basis. While some form of resource allocation strategy is necessary for emergencies, the implementation of this guideline in the absence of significant pressure on resources may reduce the likelihood of older people with frailty, who wish to be considered for critical care, being appropriately considered, and has the potential to reinforce the socio-economic gradient in health. Our incomplete understanding of this novel disease means that there is a need for research investigating the short-term predictive abilities of the CFS on critical care outcomes in COVID-19. Additionally, a review of the impact of stratifying older people by CFS score as a rationing strategy is necessary in order to assess its acceptability to older people as well as its potential for disparate impacts.

End-of-life care: A qualitative study comparing the views of people with dementia and family carers.

BACKGROUND: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. AIM: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. DESIGN: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. SETTING/PARTICIPANTS: Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England. FINDINGS: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. CONCLUSION: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

What impact does written information about fatigue have on patients with autoimmune rheumatic diseases? Findings from a qualitative study.

OBJECTIVES: Although fatigue is a common symptom for people with rheumatic diseases, limited support is available. This study explored the impact of written information about fatigue, focusing on a booklet, Fatigue and arthritis. METHODS: Thirteen patients with rheumatic disease and fatigue were recruited purposively from a rheumatology outpatient service. They were interviewed before and after receiving the fatigue booklet. Two patients, plus six professionals with relevant interests, participated in a focus group. Transcripts were analysed thematically and a descriptive summary was produced. RESULTS: Interviewees consistently reported that fatigue made life more challenging, and none had previously received any support to manage it. Reflecting on the booklet, most said that it had made a difference to how they thought about fatigue, and that this had been valuable. Around half also said that it had affected, or would affect, how they managed fatigue. No one reported any impact on fatigue itself. Comments from interviewees and focus group members alike suggested that the research process may have contributed to the changes in thought and behaviour reported. Its key contributions appear to have been: clarifying the booklet's relevance; prompting reflection on current management; and introducing accountability. CONCLUSIONS: This study indicated that written information can make a difference to how people think about fatigue and may also prompt behaviour change. However, context appeared to be important: it seems likely that the research process played a part and that the impact of the booklet may have been less if read in isolation. Aspects of the research appearing to facilitate impact could be integrated into routine care, providing a pragmatic (relatively low-cost) response to an unmet need.

Commissioning care for people with dementia at the end of life: a mixed-methods study.

OBJECTIVES: To understand how end-of-life (EoL) care for people with dementia is currently commissioned (ie, contracted) and organised, with a view to informing the development of commissioning guidance for good-quality community-based EoL care in dementia. DESIGN: Mixed-methods study; narrative review and qualitative interviews. SETTING: 8 National Health Service (NHS) clinical commissioning groups (CCGs) and five adult services across England. METHODS: Narrative review of evidence; 20 semistructured interviews (telephone and face-to-face) with professionals involved in commissioning EoL care for people with dementia. MAIN OUTCOME MEASURES: Summary of the existing evidence base for commissioning, commissioners' approaches to the commissioning process for EoL care for people with dementia in England. RESULTS: In the context of commissioning EoL for people with dementia, the literature review generated three key themes: (1) importance of joint commissioning; (2) lack of clarity for the process and (3) factors influencing commissioning. In exploring health professionals' perceptions of the commissioning process, 'uncertainty' was elicited as an overarching theme across the CCGs interviewed. Organisation of the process, lack of expertise, issues surrounding integration and the art of specification were considered important factors that contribute to the uncertainty surrounding the commissioning process. CONCLUSIONS: The current evidence base for commissioning EoL care is limited with considerable uncertainty as how clinical commissioners in England undertake the process to ensure future services are evidence-based.

Evidence-based evolution of the high-stakes postgraduate intensive care examination in Australia and New Zealand.

The Fellowship Examination for Intensive Care Medicine in Australian and New Zealand, first held in 1979, has undergone four distinct periods of development and change: * 1979-1996. Initiation and establishment of the exam as a relevant and comprehensive assessment process for a new specialty. * 1997-2001. (*) Revision to increase breadth of coverage and reliability for a growing number of candidates, and to ensure that each candidate received the same exam. (*) Expansion to incorporate assessment of CanMEDS skills, including communication, procedures and professional qualities. (*) Lengthening to increase the number of exposures, to ensure reliability. (*) Quarantining of candidates to allow the provision of a similar exam for each candidate. * 2002-2006. Increasing emphasis on examiner training and standard setting, increasing feedback to candidates to improve the educational experience and guide exam preparation, and blueprinting of questions to maintain validity. * 2007 onwards. Logistic revision to ensure feasibility for a rapidly growing number of candidates, and refinement to apply modern standard setting and quality control. The exam has been regarded as a "tough but fair" assessment in its 30 years of existence, and the committee overseeing its development has aimed to continually review the process to maintain those qualities, as well as reliability, validity and feasibility. The increasing number of candidates has allowed usable statistics to be accumulated but has tested the feasibility of running such a labour-intensive exam. To date, there have been 800 presentations to the exam, with 498 successful candidates.