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Background: In May 2020, England implemented soft 'opt-out' or 'deemed consent' for deceased donation with the intention of raising consent rates. However, this coincided with the COVID-19 pandemic, making it difficult to assess the early impact of the law change. Wales and Scotland changed their organ donation legislation to implement soft opt-out systems in 2015 and 2021 respectively. This study provides a descriptive analysis of changes in consent and transplant rates for deceased organ donation in England, Scotland and Wales. Methods: Logistic regression and descriptive trend analysis were employed to assess the probability of a patient who died in critical care becoming a donor, and to report consent rates using data, respectively, from the Intensive Care National Audit and Research Centre (ICNARC) in England from 1 April 2014 to 30 September 2021, and from the Potential Donor Audit for England, Scotland and Wales from April 2010 to June 2023. Results: The number of eligible donors in April-June 2020 were 56.5%, 59.3% and 57.6% lower in England, Scotland and Wales relative to April-June 2019 (pre-pandemic). By April-June 2023, the number of eligible donors had recovered to 87.4%, 64.2% and 110.3%, respectively, of their levels in 2019. The consent rate in England, Scotland and Wales reduced from 68.3%, 63.0% and 63.6% in April-June 2019 to 63.2%, 60.5% and 56.3% in April-June 2023. Conclusions: While the UK organ donation system shows signs of recovery from the COVID-19 pandemic, the number of eligible potential donors and consent rates remain below their pre-pandemic levels. [ABSTRACT FROM AUTHOR]

Background: Keeping the health workforce and the public informed about the latest evolving health information during a health emergency is critical to preventing, detecting and responding to infectious disease outbreaks or other health emergencies. Having a well-informed, ready, willing, and skilled workforce and an informed public can help save lives, reduce diseases and suffering, and minimize socio-economic loss in affected communities and countries. Providing "just in time" support and opportunities for learning in health emergencies is much needed for capacity building. In this paper, 'learning intervention' refers to the provision of ad-hoc, focused, or personalized training sessions with the goal of preparing the health workers for emergencies or filling specific knowledge or skill gaps. We refer to 'training methods' as instructional design strategies used to teach someone the necessary knowledge and skills to perform a task. Methods: We conducted a scoping review to map and better understand what learning interventions and training methods have been used in different types of health emergencies and by whom. Studies were identified using six databases (Pubmed/Medline, Embase, Hinari, WorldCat, CABI and Web of Science) and by consulting with experts. Characteristics of studies were mapped and displayed and major topic areas were identified. Results: Of the 319 records that were included, contexts most frequently covered were COVID-19, disasters in general, Ebola and wars. Four prominent topic areas were identified: 1) Knowledge acquisition, 2) Emergency plans, 3) Impact of the learning intervention, and 4) Training methods. Much of the evidence was based on observational methods with few trials, which likely reflects the unique context of each health emergency. Evolution of methods was apparent, particularly in virtual learning. Learning during health emergencies appeared to improve knowledge, general management of the situation, quality of life of both trainers and affected population, satisfaction and clinical outcomes. Conclusion: This is the first scoping review to map the evidence, which serves as a first step in developing urgently needed global guidance to further improve the quality and reach of learning interventions and training methods in this context. [ABSTRACT FROM AUTHOR]

Background: Value-Based Healthcare (VBHC) focuses on the value of patient outcomes and is achieved by ensuring resources already available are managed to realise the best possible individual and population health outcomes. Patient reported outcome measures (PROMs) measure the impact of illnesses from the patient perspective. We conducted a scoping review to understand how PROMs were implemented and used, and their impact in the context of VBHC. Methods: Arksey and O'Malley's overarching framework supplemented by principles from mixed-methods Framework Synthesis were used. CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, Web of Science, Google Scholar and reference lists were searched. An a priori data extraction framework was created using the review question and objectives as key domains against which to extract data. Mixed-methods data were organised, integrated and preserved in original format and reported for each domain. Results: Forty-three studies were included with 60,200 participants. Few studies reported a well-developed programme theory and we found little robust evidence of effect. PROMs were universally considered to have the potential to increase patient satisfaction with treatment and services, enhance patient awareness of symptoms and self-management, and improve health outcomes such as quality of life and global health status. Evidence is currently limited on how PROMs work and how best to optimally implement PROMs to achieve the target outcome. Implementation challenges commonly prevented the realisation of optimal outcomes and patients generally needed better and clearer communication about why PROMs were being given and how they could optimally be used to support their own self-management. Conclusion: PROMSs have yet to demonstrate their full potential in a VBHC context. Optimal PROMs implementation is poorly understood by clinicians and patients. Future studies should explore different models of PROM implementation and use within VBHC programmes to understand what works best and why for each specific context, condition, and population. [ABSTRACT FROM AUTHOR]

Introduction The systematic use of research evidence to inform health and social policies is becoming more common among governments, international organisations, and other health institutions, and systematic reviews of intervention [...]

Young people age 14–25 years with chronic kidney disease have been identified as generally having poor health outcomes and are a high-risk group for kidney transplant loss due in part to poor self-management. This raises a key question as to what happens during transition from child to adult services? This paper presents a mixed-method systematic review of health and social care evidence concerning young people with chronic kidney disease transitioning from child to adult health and social care services. Quantitative and qualitative evidence were synthesised in streams followed by an overarching synthesis. Literature searches (2000 to March 2017) were conducted using Pubmed, BioMed Central and Cochrane Library, grey literature sources ZETOC, , third sector organisations, NHS Evidence, SCIE, TRIP, Opengrey. Snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar. Of 3,125 records screened, 60 texts were included. We found that while strategies to support transition contained consistent messages, they supported the principle of a health-dominated pathway. Well-being is mainly defined and measured in clinical terms and the transition process is often presented as a linear, one-dimensional conduit. Individual characteristics, along with social, familial and societal relationships are rarely considered. Evidence from young people and their families highlights transition as a zone of conflict between independence and dependency with young people feeling powerless on one hand and overwhelmed on the other. We found few novel interventions and fewer that had been evaluated. Studies were rarely conducted by allied health and social care professionals (e.g. renal social workers and psychologists) as part of multi-disciplinary renal teams. We conclude that there is a lack of good evidence to inform providers of health and social care services about how best to meet the needs of this small but vulnerable cohort. [ABSTRACT FROM AUTHOR]

Background: Wheelchairs for children with impaired mobility provide health, developmental and psychosocial benefits, however there is limited understanding of how mobility aids affect the health-related quality of life of children with impaired mobility. Preference-based health-related quality of life outcome measures are used to calculate quality-adjusted life years; an important concept in health economics. The aim of this research was to understand how young wheelchair users and their parents define health-related quality of life in relation to mobility impairment and wheelchair use. Methods: The sampling frame was children with impaired mobility (≤18 years) who use a wheelchair and their parents. Data were collected through semi-structured face-to-face interviews conducted in participants’ homes. Qualitative framework analysis was used to analyse the interview transcripts. An a priori thematic coding framework was developed. Emerging codes were grouped into categories, and refined into analytical themes. The data were used to build an understanding of how children with impaired mobility define health-related quality of life in relation to mobility impairment, and to assess the applicability of two standard measures of health-related quality of life. Results: Eleven children with impaired mobility and 24 parents were interviewed across 27 interviews. Participants defined mobility-related quality of life through three distinct but interrelated concepts: 1) participation and positive experiences; 2) self-worth and feeling fulfilled; 3) health and functioning. A good degree of consensus was found between child and parent responses, although there was some evidence to suggest a shift in perception of mobility-related quality of life with child age. Conclusions: Young wheelchair users define health-related quality of life in a distinct way as a result of their mobility impairment and adaptation use. Generic, preference-based measures of health-related quality of life lack sensitivity in this population. Development of a mobility-related quality of life outcome measure for children is recommended. [ABSTRACT FROM AUTHOR]

Background: Qualitative research findings are increasingly used to inform decision-making. Research has indicated that not all quantitative research on the effects of interventions is disseminated or published. The extent to which qualitative researchers also systematically underreport or fail to publish certain types of research findings, and the impact this may have, has received little attention. Methods: A survey was delivered online to gather data regarding non-dissemination and dissemination bias in qualitative research. We invited relevant stakeholders through our professional networks, authors of qualitative research identified through a systematic literature search, and further via snowball sampling. Results: 1032 people took part in the survey of whom 859 participants identified as researchers, 133 as editors and 682 as peer reviewers. 68.1% of the researchers said that they had conducted at least one qualitative study that they had not published in a peer-reviewed journal. The main reasons for non-dissemination were that a publication was still intended (35.7%), resource constraints (35.4%), and that the authors gave up after the paper was rejected by one or more journals (32.5%). A majority of the editors and peer reviewers “(strongly) agreed” that the main reasons for rejecting a manuscript of a qualitative study were inadequate study quality (59.5%; 68.5%) and inadequate reporting quality (59.1%; 57.5%). Of 800 respondents, 83.1% “(strongly) agreed” that non-dissemination and possible resulting dissemination bias might undermine the willingness of funders to support qualitative research. 72.6% and 71.2%, respectively, “(strongly) agreed” that non-dissemination might lead to inappropriate health policy and health care. Conclusions: The proportion of non-dissemination in qualitative research is substantial. Researchers, editors and peer reviewers play an important role in this. Non-dissemination and resulting dissemination bias may impact on health care research, practice and policy. More detailed investigations on patterns and causes of the non-dissemination of qualitative research are needed. [ABSTRACT FROM AUTHOR]