NIHR open researchPub Date : 2025-01-17eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13568.2
Raasti Naseem, Nicola Howe, Sara Pretorius, Cameron Williams, Clare Lendrem, Philip Pallmann, Enitan D Carrol
{"title":"Mapping decision-making pathways: Determination of intervention entry points for diagnostic tests in suspected serious infection.","authors":"Raasti Naseem, Nicola Howe, Sara Pretorius, Cameron Williams, Clare Lendrem, Philip Pallmann, Enitan D Carrol","doi":"10.3310/nihropenres.13568.2","DOIUrl":"10.3310/nihropenres.13568.2","url":null,"abstract":"<p><strong>Background: </strong>PROTECT ( Platform Randomised evaluation of clinical Outcomes using novel TEChnologies to optimise antimicrobial Therapy) has brought together a team of researchers to design a platform trial to rapidly evaluate and adopt into care multiple diagnostic technologies, bringing immediate benefit to patients. Rapid diagnostic tests will be used to identify patients at risk of deterioration from severe infection, before they become critically unwell. The platform will assess their comparative clinical effectiveness and cost-effectiveness relative to current standard of care. Preliminary work, conducted under a Health Technology Assessment Application Acceleration Award, provided key evidence to optimise the design of the PROTECT platform.</p><p><strong>Methods: </strong>Qualitative methods which involved consulting key stakeholders in the field of serious infection addressed the key priorities. A high-level care pathway analysis focusing on serious infection in secondary care, captured the points of contact, actions, decisions, and potential outcomes associated with a patient's care.</p><p><strong>Results: </strong>Two use cases of rapid diagnostic tests for serious infection were identified; (1) in acute emergency medicine to decide on antimicrobial initiation and/or escalation of care, and (2) in hospitalised patients to monitor treatment response. The \"ideal\" test should be rapid, point-of-care, cheap to procure, have capacity for high usability, and ability to be performed and interpreted by all staff. Facilitators to the adoption of infection diagnostic tests is their clinical need, and the main potential barrier is poor change management and behavioural change.</p><p><strong>Conclusions: </strong>Any new test should provide robust evidence of its clinical effectiveness and have the potential to accelerate ruling in or out serious infection which benefits the clinical pathway for patients, clinicians, and hospitals as a whole, to be considered for adoption as a new standard of care.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"35"},"PeriodicalIF":0.0,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11754954/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143030379","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}
NIHR open researchPub Date : 2025-01-17eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13659.2
Wei Chern Gavin Fong, Laura Howells, Ingrid Muller, Eleanor J Mitchell, Arabella Baker, Leila Thuma, Eleanor Harrison, Lucy Bradshaw, Yimin Jiang, Fiona Cowdel, Paul Leighton, Alan Montgomery, Jane Ravenscroft, Matthew J Ridd, Miriam Santer, Reiko J Tanaka, Nicholas Hilken, Richard Swinden, Richard Dooley, Carron Layfield, Clare Upton, Sophia Collins, Firoza Davies, Tracy Owen, Mars Eddis-Finbow, Devin Patel, Goldie Putrym, Hywel C Williams, Amanda Roberts, Kim S Thomas
{"title":"The Eczema Bathing Study: Weekly versus daily bathing for people with eczema? Protocol of an online, randomised controlled trial.","authors":"Wei Chern Gavin Fong, Laura Howells, Ingrid Muller, Eleanor J Mitchell, Arabella Baker, Leila Thuma, Eleanor Harrison, Lucy Bradshaw, Yimin Jiang, Fiona Cowdel, Paul Leighton, Alan Montgomery, Jane Ravenscroft, Matthew J Ridd, Miriam Santer, Reiko J Tanaka, Nicholas Hilken, Richard Swinden, Richard Dooley, Carron Layfield, Clare Upton, Sophia Collins, Firoza Davies, Tracy Owen, Mars Eddis-Finbow, Devin Patel, Goldie Putrym, Hywel C Williams, Amanda Roberts, Kim S Thomas","doi":"10.3310/nihropenres.13659.2","DOIUrl":"10.3310/nihropenres.13659.2","url":null,"abstract":"<p><strong>Background: </strong>A priority setting partnership for eczema (syn atopic eczema, atopic dermatitis) has identified that bathing frequency is a key area of patient interest. However, there are nolarge, high-quality randomised controlled trials (RCTs) investigating this.The Rapid Eczema Trials project is a novel programme of research that aims to deliver multiple online RCTs, using a citizen science approach. This project involves working with members of the public to co-design and conduct studies that answer questions of importance to them. The first trial to be conducted through this project is assessing the impact of bathing frequency on eczema.</p><p><strong>Methods: </strong>This is an online, two-arm, parallel-group superiority RCT with internal pilot phase. People aged ≥1 year with eczemaliving in the United Kingdom are eligible. Exclusion criteria are: people with other types of eczema such as venous eczema, hand eczema and contact eczema; recently started a new eczema treatment; taking part in another eczema trial; Patient Oriented Eczema Measure (POEM) ≤2; planning to swim more than twice a week; unable/unwilling to change bathing practices. Participants are allocated 1:1 to either the weekly bathing group (bathe 1 or 2 times a week) or the daily bathing group (bathe 6 or more times a week) for 4 weeks. The primary outcome is POEM, assessed weekly over 4 weeks. Secondary outcomes include skin specific quality of life, eczema control, itch severity, use of usual eczema treatments, proportion who achieve an improvement in POEM of ≥3 points, global change in eczema and safety outcomes. A sample of participants will also be invited to a semi-structured interview to discuss their experience. The primary comparative analysis will be according to randomised allocation regardless of actual frequency of bathing. The trial will be reported in accordance with CONSORT guidelines. The study has received ethical approval by the London - Surrey Research Ethics Committee (2 Redman Place, London, E20 1JQ, United Kingdom) on 11/10/2023 ( approval number: 23/PR/0899).</p><p><strong>Trial registration: </strong>ISRCTN12016473, 22/11/2023, https://doi.org/10.1186/ISRCTN12016473.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"63"},"PeriodicalIF":0.0,"publicationDate":"2025-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11803374/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143383809","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}
NIHR open researchPub Date : 2025-01-08eCollection Date: 2025-01-01DOI: 10.3310/nihropenres.13797.1
Nuala Lucas, Alison Gooda, Ruth Tunn, Marian Knight
{"title":"Pulmonary aspiration during pregnancy or immediately postpartum in the UK: A population-based case-control study.","authors":"Nuala Lucas, Alison Gooda, Ruth Tunn, Marian Knight","doi":"10.3310/nihropenres.13797.1","DOIUrl":"10.3310/nihropenres.13797.1","url":null,"abstract":"<p><strong>Background: </strong>Pulmonary aspiration of gastric contents is the most frequent cause of death associated with complications of airway management during general anaesthesia. Pregnancy increases aspiration risk owing to factors including delayed gastric emptying and increased intragastric pressure. We describe the incidence, risk factors, management, and outcomes of maternal pulmonary aspiration in pregnancy in the UK.</p><p><strong>Methods: </strong>We conducted a population-based surveillance and case-control study. Between September 2013 and August 2016, all UK consultant-led obstetric units prospectively identified cases of pulmonary aspiration among parturient women using a pre-defined case definition, and reported them via the UK Obstetric Surveillance System (UKOSS). Controls (n=1982) were obtained from four UKOSS studies conducted between 2005 and 2014. We calculated the incidence of pulmonary aspiration using 2013-2015 maternities as the denominator. We explored potential risk factors for aspiration using univariable logistic regression and described outcomes.</p><p><strong>Results: </strong>We identified 12 cases of pulmonary aspiration, giving an incidence of 5.2 per 1,000,000 maternities (95% CI 2.69-9.09). Cases were significantly less likely than controls to be multiparous (unadjusted odds ratio [uOR] 0.255, 95% CI 0.069-0.946), and significantly more likely to undergo caesarean section (uOR 24.89, 95% CI 3.18-194.85) and to receive general anaesthetic for caesarean section (p<0.001). Gestation was significantly shorter in cases than controls (uOR 0.782, 95% CI 0.702-0.870). Women who aspirated were significantly more likely to be admitted to the intensive therapy unit than controls (p<0.001). Infants of women who aspirated had significantly lower Apgar scores and were more likely to be admitted to the neonatal intensive care unit or to be stillborn compared with infants of women in the control group.</p><p><strong>Conclusions: </strong>Pulmonary aspiration is rare in UK obstetric anaesthetic practice; however, it remains a risk of general anaesthesia. Despite a large study population, our analyses lacked power to evaluate many potential risk factors. Future research should focus on developing methods to accurately identify pregnant women at risk of aspiration.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"5 ","pages":"2"},"PeriodicalIF":0.0,"publicationDate":"2025-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11795022/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143366964","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}
NIHR open researchPub Date : 2025-01-06eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13652.2
Claudia Hardy, Andrew Brand, Julie Jones, Marian Knight, Philip Banfield
{"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.13652.2","DOIUrl":"10.3310/nihropenres.13652.2","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}
NIHR open researchPub Date : 2024-12-12eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13784.1
James King, Guruprasad Aithal, Louisa Herring, Scott Willis, Dimitris Papamargaritis, Kerry Hulley, Melanie Davies
{"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":"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}
NIHR open researchPub Date : 2024-12-10eCollection Date: 2023-01-01DOI: 10.3310/nihropenres.13504.3
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
{"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.13504.3","DOIUrl":"10.3310/nihropenres.13504.3","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}
NIHR open researchPub Date : 2024-12-05eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13696.2
George Attilakos, Anna L David, Ruth Tunn, Marian Knight, Peter Brocklehurst
{"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.13696.2","DOIUrl":"10.3310/nihropenres.13696.2","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}
NIHR open researchPub Date : 2024-12-03eCollection Date: 2023-01-01DOI: 10.3310/nihropenres.13432.2
Amel Beshir Mohammed, Fewzia Shikur Mohammed, Feleke Tilahun Zewdu, Shimelis Doni Nigusse, Yohannes Hailemichael, Teklu Cherkose, Abebaw Yeshambel Alemu, Eshetu Molla, Kidist Bobosha, Vanessa Yardley, Iris Mosweu, Mirgissa Kaba, Catherine Pitt, Elizabeth Allen, Saba Maria Lambert, Michael Marks, Stephen L Walker, Endalamaw Gadisa
{"title":"Protocol for a prospective observational cohort study of cutaneous leishmaniasis in Ethiopia.","authors":"Amel Beshir Mohammed, Fewzia Shikur Mohammed, Feleke Tilahun Zewdu, Shimelis Doni Nigusse, Yohannes Hailemichael, Teklu Cherkose, Abebaw Yeshambel Alemu, Eshetu Molla, Kidist Bobosha, Vanessa Yardley, Iris Mosweu, Mirgissa Kaba, Catherine Pitt, Elizabeth Allen, Saba Maria Lambert, Michael Marks, Stephen L Walker, Endalamaw Gadisa","doi":"10.3310/nihropenres.13432.2","DOIUrl":"https://doi.org/10.3310/nihropenres.13432.2","url":null,"abstract":"<p><strong>Background: </strong>Cutaneous leishmaniasis (CL) is a skin neglected tropical disease, with an estimated 40,000 new cases each year in Ethiopia. CL causes ulcers, nodules, and plaques on the skin, and in some instances the destruction of the nasopharyngeal mucosa and cartilage. Some CL lesions may heal spontaneously, whilst other lesions may require therapies which are associated with discomfort, adverse effects, prolonged treatment, and a frequent lack of a complete response. Scarring, a sequela of CL, causes permanent disfigurement and is associated with stigma linked with a reduction in health-related quality of life.The choice of treatment for CL is based upon factors including the causative species; the number, extent, size, and location of lesions; and the availability of treatments. The development of robust evidence for CL treatment is hindered by a lack of validated and appropriate outcome measures and few data to support hypothesis-generation and trial design. There is a paucity of prospective data with well-defined treatment outcomes for CL caused by <i>L. aethiopica</i>.</p><p><strong>Aim: </strong>The overall aim of this study is to improve the understanding of the health and economic burden of CL.</p><p><strong>Methods: </strong>We have designed an observational, multi-centre cohort study to examine treatment outcomes for CL in Ethiopia which includes clinical outcomes, laboratory outcomes, patient reported outcome measures, scar assessments and cost effectiveness. We aim to recruit up to 750 participants across two hospital sites. We present here the protocol for this cohort study with a 12-month follow up period for each participant.</p><p><strong>Conclusions: </strong>These data will inform the design of randomized controlled trials to evaluate new treatment strategies, with appropriate economic evaluations. This will help improve evidence-based guidelines and support evidence-led policy decisions, not only in Ethiopia but also globally.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"3 ","pages":"49"},"PeriodicalIF":0.0,"publicationDate":"2024-12-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11748424/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627974","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}
NIHR open researchPub Date : 2024-11-27eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13650.2
Ruairi Lynch, Jonathan Fallowfield, David Blane, Rachael Swann, Kirsty Mills, Amy Cordwell, Ewan Forrest
{"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}
NIHR open researchPub Date : 2024-11-27eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13671.2
Abigail J Hall, Richard Griffin, Fay Manning, Victoria A Goodwin
{"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}