NIHR open research最新文献

{"title":"The UK Breast Cancer in Pregnancy (UKBCiP) Study. Incidence, diagnosis, management and short-term outcomes of breast cancer first diagnosed during pregnancy in the United Kingdom: A population-based descriptive study.","authors":"Claudia Hardy, Andrew Brand, Julie Jones, Marian Knight, Philip Banfield","doi":"10.3310/nihropenres.13652.1","DOIUrl":"10.3310/nihropenres.13652.1","url":null,"abstract":"<p><strong>Background: </strong>The incidence of breast cancer first arising during pregnancy has been estimated in several countries to be 2.4-7.8/100,000 births, but has not been established in the United Kingdom (UK). We aimed to estimate the incidence of breast cancer diagnosed during pregnancy in the UK and to describe its management and short-term outcomes for mothers and babies.</p><p><strong>Methods: </strong>This population-based descriptive study used the UK Obstetric Surveillance System (UKOSS). Cases were prospectively identified through monthly UKOSS mailings to all UK consultant-led maternity units. All cases of breast cancer diagnosed first during pregnancy, between October 1, 2015, and September 30, 2017, were eligible, with 84 confirmed cases analysed. Women with breast cancer diagnosed before pregnancy or with a recurrence were excluded. The primary outcomes were the incidence of breast cancer first diagnosed during pregnancy, maternal mortality, severe maternal morbidity, perinatal mortality, and severe neonatal morbidity.</p><p><strong>Results: </strong>The incidence was 5.4/100,000 maternities (95% CI 4.37, 6.70). Nine women (11%) had undergone <i>in vitro</i> fertilisation (IVF), compared with a contemporaneously estimated 2.6% IVF pregnancies in the UK. During pregnancy, 30 women (36%) underwent surgery and 37 (44%) received chemotherapy. Three women had major maternal morbidity during pregnancy. Two women died and two perinatal deaths occurred.</p><p><strong>Conclusions: </strong>The incidence of breast cancer arising in pregnancy in the UK is similar to that reported elsewhere. The higher proportion of IVF pregnancies among affected women needs further investigation, as it may not be entirely explained by relatively advanced maternal age. With caveats, management followed that outside pregnancy, but there was considerable variation in practice. Although short-term outcomes were generally good for mothers and babies, a larger prospective study is required. Iatrogenic pre-term delivery and its associated risks to the infant can often be avoided; treatment was administered during pregnancy without evidence of harms to the infant.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"40"},"PeriodicalIF":0.0,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11372348/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142134666","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Midlands Liver Research Alliance - A partnership to optimise obesity-related liver disease research: targeting areas of high incidence and underserved communities.","authors":"James King, Guruprasad Aithal, Louisa Herring, Scott Willis, Dimitris Papamargaritis, Kerry Hulley, Melanie Davies","doi":"10.3310/nihropenres.13784.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13784.1","url":null,"abstract":"<p><strong>Background: </strong>The prevalence of liver disease is rising in the United Kingdom (UK), with obesity underpinning surging metabolic dysfunction-associated steatotic liver disease (MASLD). MASLD is associated with an increased cardiometabolic risk, particularly when co-existing with type 2 diabetes. Progression to metabolic dysfunction-associated steatohepatitis (MASH) with hepatic fibrosis represents a clinical milestone strongly linked to serious liver disease and mortality.Therefore, clinically meaningful and sustained weight loss (≥10%) is a primary therapeutic target for patients with MASLD. Unfortunately, this is difficult for most people who adopt traditional lifestyle approaches. However, new obesity pharmacotherapies hold promise in MASLD, given their ability to produce dramatic weight loss (10-25%) and improve cardiometabolic health. Questions remain about the ability of these agents to improve liver fibrosis and patient-reported outcomes/quality of life in patients with advanced liver disease.</p><p><strong>Methods: </strong>Led from the Midlands (UK) but with national representation, we developed a network of stakeholders (clinicians, academics, third-sector, industry, and PPIE representatives) with an interest in obesity-related liver diseases. This network was called the Midlands Liver Research Alliance (MLRA), which sought to 1) establish a PPIE stakeholder network, 2) identify research priorities, and 3) map the network infrastructure and expertise. Health inequalities within liver disease are a core priority within the MLRA.</p><p><strong>Results: </strong>The MLRA developed a large PPIE stakeholder network in collaboration with other local liver partnerships. These networks facilitated the identification of key research priorities that led to three NIHR funding applications. Priorities centered around: 1) the importance of patient-centered outcomes in obesity-related liver disease research; 2) the potential of glucagon-like peptide 1 (GLP-1)-based obesity pharmacotherapy in alcohol use disorder; and 3) early identification and management of liver disease in primary care/community.</p><p><strong>Conclusions: </strong>The MLRA has created a multidisciplinary hub of research expertise in obesity-related liver disease. This foundation provides a springboard for research activities in this area.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"75"},"PeriodicalIF":0.0,"publicationDate":"2024-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12181761/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144478084","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Natural language processing for detecting adverse drug events: A systematic review protocol.","authors":"Imane Guellil, Jinge Wu, Aryo Pradipta Gema, Farah Francis, Yousra Berrachedi, Nidhaleddine Chenni, Richard Tobin, Clare Llewellyn, Stella Arakelyan, Honghan Wu, Bruce Guthrie, Beatrice Alex","doi":"10.3310/nihropenres.13504.2","DOIUrl":"10.3310/nihropenres.13504.2","url":null,"abstract":"<p><strong>Background: </strong>Detecting Adverse Drug Events (ADEs) is an emerging research area, attracting great interest in the research community. Better anticipatory management of predisposing factors has considerable potential to improve outcomes. Automatic extraction of ADEs using Natural Language Processing (NLP) has a great potential to significantly facilitate efficient and effective distillation of such knowledge, to better understand and predict risk of adverse events.</p><p><strong>Methods: </strong>This systematic review follows the six-stage including the literature from 6 databases (Embase, Medline, Web Of Science Core Collection, ACM Guide to Computing Literature, IEEE Digital Library and Scopus). Following the title, abstract and full-text screenings, characteristics and main findings of the included studies and resources will be tabulated and summarized. The risk of bias and reporting quality was assessed using the PROBAST tool.</p><p><strong>Results: </strong>We developed our search strategy and collected all relevant publications. As of December 2024, we have completed all the stages of the systematic review. We identified 178 studies for inclusion through the academic literature search (where data was extracted from all of the papers). Right now, we are writing up the systematic review paper where we are synthesising the different findings. Further refinement of the eligibility criteria and data extraction has been ongoing since August 2022.</p><p><strong>Conclusion: </strong>In this systematic review, we will identify and consolidate information and evidence related to the use and effectiveness of existing NLP approaches and tools for automatically detecting ADEs from free text (discharge summaries, General Practitioner notes, social media, etc.). Our findings will improve the understanding of the current landscape of the use of NLP for extracting ADEs. It will lead to better anticipatory management of predisposing factors with the potential to improve outcomes considerably. Our results will also be valuable both to NLP researchers developing methods to extract ADEs and to translational/clinical researchers who use NLP for this purpose and in healthcare in general. For example, from our initial analysis of the studies, we can conclude that the majority of the proposed works are about the detection (extraction) of ADEs from text. An important portion of studies also focus on the binary classification of text (for highlighting if it includes or not ADEs). Different challenges related to the unbalanced dataset, abbreviations and acronyms but also to the lower results with rare ADEs were also mentioned by the studied papers.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"3 ","pages":"67"},"PeriodicalIF":0.0,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11808655/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143392606","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Incidence and outcomes of vasa praevia in the United Kingdom.","authors":"George Attilakos, Anna L David, Ruth Tunn, Marian Knight, Peter Brocklehurst","doi":"10.3310/nihropenres.13696.1","DOIUrl":"10.3310/nihropenres.13696.1","url":null,"abstract":"<p><strong>Background: </strong>Vasa praevia is an obstetric condition in which the fetal vessels run through the membrane over the internal cervical os, unprotected by the placenta or umbilical cord. It is associated with perinatal mortality if not diagnosed antenatally. We estimated the incidence and investigated outcomes of vasa praevia in the UK.</p><p><strong>Methods: </strong>We conducted a population-based descriptive study using the UK Obstetric Surveillance System (UKOSS). Cases were identified prospectively through monthly UKOSS submissions from all UK hospitals with obstetrician-led maternity units. All women diagnosed with vasa praevia who gave birth between 1st December 2014 and 30th November 2015 were included. The main outcome was estimated incidence of vasa praevia with 95% confidence intervals, using 2015 maternities as the denominator.</p><p><strong>Results: </strong>Fifty-one women met the case definition. The estimated incidence of diagnosed vasa praevia was 6.64 per 100,000 maternities (95% CI 5.05-8.73). Of 198 units, 10 (5%) had a vasa praevia screening programme; one of these 10 units identified 25% of the antenatally diagnosed cases. Among women who had vasa praevia diagnosed or suspected antenatally (n=28, 55%), there were no perinatal deaths or hypoxic ischaemic encephalopathy (HIE). Twenty-four women with antenatal diagnosis were hospitalised at a median 32 weeks' gestation and caesarean section was scheduled at a median 36 weeks' gestation. When vasa praevia was diagnosed peripartum (n=23, 45%), the perinatal mortality rate was 37.5% and 47% of survivors developed HIE.</p><p><strong>Conclusions: </strong>The incidence of diagnosed vasa praevia was lower than anticipated. There was high perinatal mortality and morbidity for cases not diagnosed antenatally. The incidence of antenatally identified cases was much higher in the few centres that actively screened for this condition, and the perinatal outcomes were better. However, this group were all delivered by caesarean section and may include women who would not have experienced any adverse perinatal outcome.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"49"},"PeriodicalIF":0.0,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142362512","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Scottish Hepatology Access Research Partnership (SHARP) improving access to liver services throughout Scotland.","authors":"Ruairi Lynch, Jonathan Fallowfield, David Blane, Rachael Swann, Kirsty Mills, Amy Cordwell, Ewan Forrest","doi":"10.3310/nihropenres.13650.2","DOIUrl":"10.3310/nihropenres.13650.2","url":null,"abstract":"<p><strong>Background and aims: </strong>Scotland has the highest rate of deaths from chronic liver disease (CLD) in the UK. Socioeconomic and geographic isolation represent significant challenges to delivery of care. The multidisciplinary Scottish Hepatology Access Research Partnership (SHARP) aimed to identify and break down barriers to diagnosing and treating liver disease in Scotland.</p><p><strong>Methods: </strong>SHARP comprised a core Partnership Management Group that developed projects and a Partnership Advisory Group which provided oversight.</p><p><strong>Results: </strong>SHARP established workstreams to achieve its aims: Understanding current access to liver services To identify barriers to liver patient care in Scotland we audited liver services and surveyed the experience of patients (n=276); primary care physicians (n=199) and Gastroenterologists/Hepatologists (n=99). Technologies to monitor and diagnose CLD Liver disease is diagnosed and monitored using routine blood testing which disadvantages isolated patients. We plan to develop a point of use test to analyse ALT and AST to enable community-based identification and monitoring of liver disease. Identification of patients at risk of liver disease CLD is often diagnosed late. We propose developing an artificial intelligence tool to predict an individual's risk of an emergent admission to hospital due to CLD. This tool will be validated in a Welsh cohort. Barriers to engagement with care for liver disease Hepatology did-not-attend rates are the highest of any specialty. We propose research to co-design a suite of recommendations to improve engagement with care for CLD patients. We aim to achieve this by interviewing practitioners alongside patients who do and don't engage with services.</p><p><strong>Conclusions: </strong>Through a national survey SHARP has developed an understanding of the issues affecting access to hepatology services in Scotland. SHARP has developed projects that will help address the issues that socioeconomically and geographically isolated patients face when it comes to identifying and treating liver disease.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"58"},"PeriodicalIF":0.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11628933/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142807819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Support workers knowledge, skills and education relating to dementia - a national survey.","authors":"Abigail J Hall, Richard Griffin, Fay Manning, Victoria A Goodwin","doi":"10.3310/nihropenres.13671.2","DOIUrl":"10.3310/nihropenres.13671.2","url":null,"abstract":"<p><strong>Background: </strong>Dementia affects over 55 million people globally, projected to double by 2050. In the UK, non-registered staff, including healthcare assistants (HCAs) and clinical support workers, provide a significant portion of dementia care, yet receive limited training. This study explores the knowledge, training, and attitudes of support workers towards dementia.</p><p><strong>Methods: </strong>A cross-sectional web-based survey was conducted from February 1 to April 1, 2024, targeting support workers in England. The survey included demographic information, dementia knowledge (using the Dementia Knowledge Assessment Scale, DKAS), and attitudes (using the Dementia Attitudes Scale, DAS). Data were analysed using descriptive statistics, ANOVA, t-tests, and Pearson's correlation.</p><p><strong>Results: </strong>One hundred and nine support workers responded, predominantly female (90%) and white British (76.4%), from various NHS settings and occupational groups. The majority (79.8%) had received dementia training, primarily from their organisations. Challenges included managing behavioural and psychological symptoms and communication difficulties. There was no significant correlation between years of experience and dementia knowledge (r = -0.019) or attitudes (r = -0.057). However, higher occupational grades were associated with greater dementia knowledge (p = <0.01). A moderate positive correlation was found between dementia knowledge and attitudes (r = 0.35, p = <0.01).Despite high levels of knowledge, support workers often feel inadequately prepared to provide optimal dementia care, indicating a need for more comprehensive training. Challenges in communication and managing symptoms highlight areas for improvement. The study suggests that better training can improve both knowledge and attitudes, enhancing care quality for people living with dementia.</p><p><strong>Conclusion: </strong>Support workers play a crucial role in dementia care but require more robust training programs to meet the growing demands. Enhanced training can improve their knowledge and attitudes, leading to better care outcomes for people with dementia.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"54"},"PeriodicalIF":0.0,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11605170/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142775232","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Our approach to developing communities of practice to foster research capacities for the adult social care workforce.","authors":"Ferhana Hashem, Wenjing Zhang, Rasa Mikelyte, Sweta Rajan-Rankin, Ecaterina Porumb, Olivia Trapp, Ann-Marie Towers","doi":"10.3310/nihropenres.13461.1","DOIUrl":"10.3310/nihropenres.13461.1","url":null,"abstract":"<p><strong>Background: </strong>Efforts to build and foster adult social care research in England have historically encountered more challenges to its growth and expansion compared with health research, with a sector facing significant barriers in facilitating research activity due to a lack of resourcing, poor valuation or understanding of the profile of social care research. The landscape for supporting the social care workforce to use, engage in and undertake research in adult social care has been rather bleak, but in recent years there has been recognition of the need to foster a social care workforce research community. The National Institute for Health and Care Research in England have committed to investing in social care research capacity by funding six adult social care partnerships, with one based in Southeast England. Setting up Communities of Practice (COPs) offers a model to build a shared learning space to foster a social care research community. Process developing COPs: Three online networking events were held in the first year of the project to engage managers and practitioners from the local authority and from the wider adult social care sector, taking place in July and November 2021, and March 2022. Two COPs were identified, following an ordering and thematising process of feedback from the networking events, of: (a) Supporting people with complex needs throughout the lifespan, and (b) Enhancing, diversifying and sustaining the social care workforce. Whilst it would be premature to identify their long-term impacts, the COPs have provided a space for regular communication, knowledge sharing and networking between members.</p><p><strong>Conclusions: </strong>The COP framework offers a collaborative approach to initiating research from the grass-roots level in adult social care. This paper focuses on how the COP model offers great promise for knowledge-exchange providing a forum to generate and disseminate knowledge around social care in two COP domains.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":" ","pages":"43"},"PeriodicalIF":0.0,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10593316/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47971820","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"INdependenT prEscribinG in community phaRmAcy; whaT works for whom, why and in what circumstancEs (INTEGRATE): Realist review study protocol.","authors":"Ola Amr Abdelfatah, Andrea Hilton, Ellen Schafheutle, Geof Wong, Keith Holden, Lesley Scott, Nia Roberts, Nick Haddington, Tony Kelly, Vivienne Hibberd, Andrew Sturrock, Ian Maidment","doi":"10.3310/nihropenres.13766.1","DOIUrl":"10.3310/nihropenres.13766.1","url":null,"abstract":"<p><strong>Introduction: </strong>The last decades have witnessed a series of initiatives in the United Kingdom (UK) to enhance patient access to quality care including access to medicine without compromising patient's safety. Pharmacist independent prescribing is one of the initiatives introduced in 2006 with the intention of making more effective use of the skills and competencies of health professionals. Community pharmacy has a key role in the NHS long-term plan since pharmacies offer convenient and accessible sources of healthcare advice for the public. This role is more evident with the introduction of prescribing for all qualified pharmacists at the point of registration starting 2026. This realist review aims to explore how does independent prescribing in community pharmacy works, for whom, in what circumstances and how.</p><p><strong>Method and analysis: </strong>Realist research seeks to explore and explain complex social interventions by utilising programme theories providing causal explanations of outcomes in terms of context-mechanism-outcome configurations.INTEGRATE will progress through six stages. In the first stage, we will partner with Patient, Public, Involvement and Engagement Group (PPIE) and Practitioner Stakeholder Group (SG), to further scrutinise the review's focus. In stage 2, we will develop initial programme theories for what makes independent prescribing effective in community pharmacy, for whom, in what circumstances and how. In the third stage, we will conduct literature searches to gather secondary data that will help refine our initial programme theories.In stage 4, we will select and appraise identified articles by screening titles, abstracts and full texts against inclusion and exclusion criteria. In stage 5, we will extract, document and code relevant data, followed by realist analysis with contributions from the PPIE and SG. Stage 6 focuses on refining programme theories and identifying key mechanisms that lead to desired outcomes.PROSPERO registration: CRD42023468451.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"72"},"PeriodicalIF":0.0,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11808844/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143392072","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Connected Communities | Learning lessons from person-centred community-based support services' implementation: a mixed-methods study protocol.","authors":"Danielle L Christian, Kathryn Berzins, Jo C Weldon, Madalina Toma, Mark Gabbay, Caroline Watkins, Julien Forder","doi":"10.3310/nihropenres.13494.2","DOIUrl":"10.3310/nihropenres.13494.2","url":null,"abstract":"<p><strong>Background: </strong>Person-centred community-based support services (PCCBSS) are an array of non-clinical services provided by organisations such as NHS Trusts, voluntary sector organisations, or local authorities.All PCCBSS involve an individual (variously known as a 'social prescriber', 'link worker', 'signposter', 'navigator', 'connector' or 'neighbourhood coach') who talks with a service user before directing them to a range of relevant community sources of social, emotional, and practical support.Despite much recent investment in social prescribing, and its increased prominence within the policy context across England, little is understood about how PCCBSS are implemented. Research is required across different contexts to describe PCCBSS implementation; in particular, how social care providers successfully interact to support the implementation of PCCBSS, and how services responded to circumstances imposed by the COVID-19 pandemic.</p><p><strong>Purpose: </strong>The aim of this post-implementation mixed-methods study is to explore how PCCBSS are implemented and become part of usual working practice. Using three services in North West England as case studies, we will examine factors influencing PCCBSS implementation and establish where there is learning for the wider adult social care system.</p><p><strong>Focus: </strong>The study comprises two work packages (WPs):WP1: collecting data by reviewing service documents from three PCCBSS case studies;WP2: interviewing staff and service users (≤20 participants per PCCBSS);Key implementation data will be systematically abstracted (from WPs1&2) into a coding frame; combining contextual determinants from the Consolidated Framework for Implementation Research (CFIR) with process-related domains from Normalization Process Theory (NPT).</p><p><strong>Key outputs: </strong>The findings from WP1 and WP2 will be presented in the form of an illustrated 'pen portrait', developed collaboratively with Applied Research Collaboration North West Coast ARC NWC public advisers, to illustrate how implementation evolved for each of the PCCBSS across key time-points in the process (initiation; operation; maintenance). The findings will also inform an online implementation toolkit providing recommendations for setting up future PCCBSS.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"3 ","pages":"66"},"PeriodicalIF":0.0,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11863302/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143517292","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Decompensated Liver Cirrhosis Research Network (UK-CLIF): Building consensus for hepatology trials in the UK.","authors":"Helen Crisp, Oliver Tavabie, Yvanne Enever, Richard Allen, Milton Silverman, Juan Acevedo, Abhishek Chauhan, Brian Hogan, Vishal Patel, Rajeshwar Mookerjee, Gavin Wright, Richard Aspinall, Stuart McPherson, Andrew Cook, Rajiv Jalan, Gautam Mehta","doi":"10.3310/nihropenres.13669.1","DOIUrl":"10.3310/nihropenres.13669.1","url":null,"abstract":"<p><p>Liver disease is a major, and increasing, cause of death in the UK. The UK Chronic Liver Failure network (UK-CLIF) was developed as a multi-stakeholder network with the aim to advance cirrhosis research, with emphasis on geographical areas of high disease prevalence or limited research activity. The process involved network development through dissemination and snowball sampling techniques, with monitoring of network development and connections between participants, developed over two online meetings. Network membership included representatives from patients, carers, clinicians, researchers, R&D professionals, industry representatives, and the third sector. Subsequently, two facilitated in-person workshops were conducted with network participants. World Café methodology and participant dot voting was used to develop areas of priority and consensus in: (i) research infrastructure for cirrhosis clinical trials, (ii) clinical factors affecting research delivery, and (iii) research priorities for future trials. Thematic analysis demonstrated that the need for patient-centric trial materials, a lack of resource for clinicians to participate in research, and variability in the standard of inpatient care for cirrhosis, were barriers for cirrhosis clinical trials. Future activities for UK-CLIF include participation in a process of quality standard setting for inpatient care for cirrhosis, and coordination of a James Lind Alliance Priority Setting Partnership to develop research questions for liver cirrhosis.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"69"},"PeriodicalIF":0.0,"publicationDate":"2024-11-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11808654/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143392610","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}