Ayana Cant, A. Zylbersztejn, Laura Gimeno, R. Gilbert, Katie Harron
{"title":"Primary school attainment outcomes in children with neurodisability: Protocol for a population-based cohort study using linked education and hospital data from England","authors":"Ayana Cant, A. Zylbersztejn, Laura Gimeno, R. Gilbert, Katie Harron","doi":"10.3310/nihropenres.13588.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13588.1","url":null,"abstract":"Background Neurodisability describes a broad range of heterogenous conditions affecting the brain and/or the neuromuscular system that result in functional limitations including cognitive, sensory, and motor impairments. Children with neurodisability have complex health and educational needs. They are likely to achieve below-expected levels in measures of school attainment and require special educational needs provision. While the educational outcomes of children with specific conditions under neurodisability have been investigated previously, there is little evidence on the collective outcomes of population or the progression of their attainment throughout primary school. This study aims to describe educational attainment and attainment trajectories by the end of primary school for children in England with neurodisability recorded in hospital records, compared to their peers. Methods We will use the Education and Child Health Insights from Linked Data (ECHILD) database, which links educational and health records across England. We will define a primary school cohort of children who were born in National Health Service funded hospitals in England between 1st September 2003 and 31st August 2008, who were enrolled in reception of a state-funded primary school at age 4/5 years. Children with neurodisability will be identified using diagnostic and procedure codes recorded from birth to the end of primary school (age 11) in hospital admission records. We will describe educational outcomes at reception (Early Years Foundation Stage Profile, age 4/5), year two (key stage one, age 6/7), and year six (key stage two, age 10/11) for three groups of children: those with an indicator of neurodisability first recorded before the beginning of primary school, those with an indicator of neurodisability first recorded during primary school, and those without a record of neurodisability before the end of primary school. We will additionally explore the variation in educational outcomes between these groups, accounting for socioeconomic and demographic characteristics.","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":" 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140998083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
F. Mughal, Carolyn A Chew-Graham, Benjamin Saunders, Sarah A. Lawton, Sarah Lewis, Jo Smith, Gillian Lancaster, Ellen Townsend, Christopher J. Armitage, Peter Bower, Nav Kapur, David Kessler, Alba X. Realpe, Nicola Wiles, Dennis Ougrin, Martyn Lewis
{"title":"The CO-produced Psychosocial INtervention delivered by GPs to young people after self-harm (COPING): protocol for a feasibility study","authors":"F. Mughal, Carolyn A Chew-Graham, Benjamin Saunders, Sarah A. Lawton, Sarah Lewis, Jo Smith, Gillian Lancaster, Ellen Townsend, Christopher J. Armitage, Peter Bower, Nav Kapur, David Kessler, Alba X. Realpe, Nicola Wiles, Dennis Ougrin, Martyn Lewis","doi":"10.3310/nihropenres.13576.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13576.1","url":null,"abstract":"Background Self-harm in young people is a growing concern and reducing rates a global priority. General practitioners (GPs) can intervene early after self-harm but there are no effective treatments presently available. We developed the GP-led COPING intervention, in partnership with young people with lived experience and GPs, to be delivered to young people 16–25 years across two consultations. This study aims to examine the feasibility and acceptability of conducting a fully powered effectiveness trial of the COPING intervention in NHS general practice. Methods This will be a mixed-methods external non-randomised before-after single arm feasibility study in NHS general practices in the West Midlands, England. Patients aged 16–25 years who have self-harmed in the last 12 months will be eligible to receive COPING. Feasibility outcomes will be recruitment rates, intervention delivery, retention rates, and completion of follow-up outcome measures. All participants will receive COPING with a target sample of 31 with final follow-up data collection at six months from baseline. Clinical data such as self-harm repetition will be collected. A nested qualitative study and national survey of GPs will explore COPING acceptability, deliverability, implementation, and likelihood of contamination. Discussion Brief GP-led interventions for young people after self-harm are needed and address national guideline and policy recommendations. This study of the COPING intervention will assess whether a main trial is feasible. Registration ISRCTN (ISRCTN16572400; 28.11.2023).","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":" 43","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140999198","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
NIHR open researchPub Date : 2024-05-03eCollection Date: 2023-01-01DOI: 10.3310/nihropenres.13377.1
Alexis Joannides, Tommi Kalevi Korhonen, David Clark, Sujit Gnanakumar, Sara Venturini, Midhun Mohan, Thomas Bashford, Ronnie Baticulon, Indira Devi Bhagavatula, Ignatius Esene, Rocío Fernández-Méndez, Anthony Figaji, Deepak Gupta, Tariq Khan, Tsegazeab Laeke, Michael Martin, David Menon, Wellingson Paiva, Kee B Park, Jogi V Pattisapu, Andres M Rubiano, Vijaya Sekhar, Hamisi Shabani, Kachinga Sichizya, Davi Solla, Abenezer Tirsit, Manjul Tripathi, Carole Turner, Bart Depreitere, Corrado Iaccarino, Laura Lippa, Andrew Reisner, Gail Rosseau, Franco Servadei, Rikin Trivedi, Vicknes Waran, Angelos Kolias, Peter Hutchinson
{"title":"An international, prospective observational study on traumatic brain injury epidemiology study protocol: <i>GEO-TBI: Incidence</i>.","authors":"Alexis Joannides, Tommi Kalevi Korhonen, David Clark, Sujit Gnanakumar, Sara Venturini, Midhun Mohan, Thomas Bashford, Ronnie Baticulon, Indira Devi Bhagavatula, Ignatius Esene, Rocío Fernández-Méndez, Anthony Figaji, Deepak Gupta, Tariq Khan, Tsegazeab Laeke, Michael Martin, David Menon, Wellingson Paiva, Kee B Park, Jogi V Pattisapu, Andres M Rubiano, Vijaya Sekhar, Hamisi Shabani, Kachinga Sichizya, Davi Solla, Abenezer Tirsit, Manjul Tripathi, Carole Turner, Bart Depreitere, Corrado Iaccarino, Laura Lippa, Andrew Reisner, Gail Rosseau, Franco Servadei, Rikin Trivedi, Vicknes Waran, Angelos Kolias, Peter Hutchinson","doi":"10.3310/nihropenres.13377.1","DOIUrl":"10.3310/nihropenres.13377.1","url":null,"abstract":"<p><strong>Background: </strong>The epidemiology of traumatic brain injury (TBI) is unclear - it is estimated to affect 27-69 million individuals yearly with the bulk of the TBI burden in low-to-middle income countries (LMICs). Research has highlighted significant between-hospital variability in TBI outcomes following emergency surgery, but the overall incidence and epidemiology of TBI remains unclear. To address this need, we established the Global Epidemiology and Outcomes following Traumatic Brain Injury (GEO-TBI) registry, enabling recording of all TBI cases requiring admission irrespective of surgical treatment.</p><p><strong>Objective: </strong>The GEO-TBI: Incidence study aims to describe TBI epidemiology and outcomes according to development indices, and to highlight best practices to facilitate further comparative research.</p><p><strong>Design: </strong>Multi-centre, international, registry-based, prospective cohort study.</p><p><strong>Subjects: </strong>Any unit managing TBI and participating in the GEO-TBI registry will be eligible to join the study. Each unit will select a 90-day study period. All TBI patients meeting the registry inclusion criteria (neurosurgical/ICU admission or neurosurgical operation) during the selected study period will be included in the GEO-TBI: Incidence.</p><p><strong>Methods: </strong>All units will form a study team, that will gain local approval, identify eligible patients and input data. Data will be collected via the secure registry platform and validated after collection. Identifiers may be collected if required for local utility in accordance with the GEO-TBI protocol.</p><p><strong>Data: </strong>Data related to initial presentation, interventions and short-term outcomes will be collected in line with the GEO-TBI core dataset, developed following consensus from an iterative survey and feedback process. Patient demographics, injury details, timing and nature of interventions and post-injury care will be collected alongside associated complications. The primary outcome measures for the study will be the Glasgow Outcome at Discharge Scale (GODS) and 14-day mortality. Secondary outcome measures will be mortality and extended Glasgow Outcome Scale (GOSE) at the most recent follow-up timepoint.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":" ","pages":"34"},"PeriodicalIF":0.0,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10593326/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45021547","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 : 2024-05-02eCollection Date: 2023-01-01DOI: 10.3310/nihropenres.13409.2
Libby Sadler, Hayley Jones, Penny Whiting, Morwenna Rogers, Kelsey Watt, Matthew Cramp, Stephen Ryder, Ken Stein, Nicky Welton, Felicity Oppe, John Bell, Gabriel Rogers
{"title":"Diagnostic accuracy of serological and imaging tests used in surveillance for hepatocellular carcinoma in adults with cirrhosis: a systematic review protocol.","authors":"Libby Sadler, Hayley Jones, Penny Whiting, Morwenna Rogers, Kelsey Watt, Matthew Cramp, Stephen Ryder, Ken Stein, Nicky Welton, Felicity Oppe, John Bell, Gabriel Rogers","doi":"10.3310/nihropenres.13409.2","DOIUrl":"10.3310/nihropenres.13409.2","url":null,"abstract":"<p><strong>Background: </strong>Liver cirrhosis is the largest risk factor for developing hepatocellular carcinoma (HCC), and surveillance is therefore recommended among this population. Current guidance recommends surveillance with ultrasound, with or without alpha-fetoprotein (AFP). This review is part of a larger project looking at benefits, harms and costs of surveillance for HCC in people with cirrhosis. It aims to synthesise the evidence on the diagnostic accuracy of imaging or biomarker tests, alone or in combination, to identify HCC in adults with liver cirrhosis in a surveillance programme.</p><p><strong>Methods: </strong>We will identify studies through a 2021 Cochrane review with similar eligibility criteria, and a database search of MEDLINE, Embase and the Cochrane Database of Systematic Reviews. We will include diagnostic test accuracy studies with adult cirrhosis patients of any aetiology. Studies must assess at least one of the following index tests: ultrasound (US), magnetic resonance imaging (MRI), computerised tomography (CT), alpha-fetoprotein (AFP), des-gamma-carboxyprothrombin (DCP), lens culinaris agglutinin-reactive fraction of AFP (AFP-L3), a genomic biomarker, or a diagnostic prediction model incorporating at least one of the above-mentioned tests. We will assess studies for risk of bias using QUADAS-2 and QUADAS-C. We will combine data using bivariate random effects meta-analyses. For tests evaluated across varying diagnostic thresholds, we will produce pooled estimates of sensitivity and specificity across the full range of numerical thresholds, where possible. Where sufficient studies compare two or more index tests, we will perform additional analyses to compare the accuracy of different tests. Where feasible, we will stratify all meta-analyses by tumour size and patient characteristics, including cirrhosis aetiology and liver disease severity.</p><p><strong>Discussion: </strong>This review will synthesise evidence across the full range of possible surveillance tests, using advanced statistical methods to summarise accuracy across all thresholds and to compare the accuracy of different tests.</p><p><strong>Prospero registration: </strong>CRD42022357163.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"3 ","pages":"23"},"PeriodicalIF":0.0,"publicationDate":"2024-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11320044/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141977377","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}
Laura Gimeno, A. Zylbersztejn, Ayana Cant, Katie Harron, R. Gilbert
{"title":"Planned and unplanned hospital admissions and health-related school absence rates in children with neurodisability: Protocol for a population-based study using linked education and hospital data from England.","authors":"Laura Gimeno, A. Zylbersztejn, Ayana Cant, Katie Harron, R. Gilbert","doi":"10.3310/nihropenres.13558.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13558.1","url":null,"abstract":"Background Neurodisability describes a broad set of conditions affecting the brain and nervous system which result in functional limitations. Children with neurodisability have more hospital admissions than their peers without neurodisability and higher rates of school absence. However, longitudinal evidence comparing rates of hospital admission and school absence in children with neurodisability to peers without neurodisability throughout school is limited, as is understanding about whether differences are greatest for planned care (e.g., scheduled appointments) or unplanned care. This study will describe rates of planned and unplanned hospital admissions and school absence due to illness and medical reasons throughout primary school (Reception to Year 6, ages 4 to 11 in England) for children with neurodisability and all other children, using linked individual-level health and education data. Methods We will use the ECHILD (Education and Child Insights from Linked Data) database, which links educational and health records across England. We will define a primary school cohort of children who were born in National Health Service-funded hospitals in England between 1st September 2003 and 31st August 2008, and who were enrolled in Reception (age 4/5) at state-funded schools. We will use hospital admissions records to identify children who have recorded indicators of neurodisability from birth up to the end of primary school (Year 6, age 10/11). Results We will describe rates of planned and unplanned hospital admissions and health-related school absence for three groups of children: those with a neurodisability indicator first recorded before beginning primary school, those with neurodisability first recorded during primary school, and those without a record of neurodisability before end of primary school. Conclusions We will further explore whether differences between these group vary across primary school years and by socioeconomic and demographic characteristics.","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"25 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141058281","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
NIHR open researchPub Date : 2024-04-29eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13556.1
Athanasios Saratzis
{"title":"Designing a platform/adaptive randomised controlled trial for peripheral arterial disease (PAD) - The PAEDIS international platform trial development project.","authors":"Athanasios Saratzis","doi":"10.3310/nihropenres.13556.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13556.1","url":null,"abstract":"<p><strong>Background: </strong>Peripheral artery disease (PAD) is a common health problem. There are several technologies, medications, and interventions that aim to improve or treat PAD in people with symptomatic disease. Most of these technologies, however, have been untested in high-quality randomised studies assessing effectiveness and their interactions remain unknown. We developed a proposed design for an international randomised controlled trial assessing multiple PAD treatments.</p><p><strong>Methods: </strong>Over the course of 11 months (2023) several workshops and reviews of the literature took place. More specific, the proposed platform trial was designed with 44 people with PAD and 112 experts from across the world, in five work packages. The most relevant PAD treatment with unproven effectiveness were identified and key trial components as well as success criteria were defined. With input from five clinical trials units, the final format of a potential platform PAD trial in primary and secondary care was then proposed for funding.</p><p><strong>Results: </strong>The proposed platform PAD randomised trial involved two major multi-arm multi-stage randomised studies, assessing PAD treatments in the community setting (1 <sup>st</sup> package) and then secondary care (2 <sup>nd</sup> package). The 1 <sup>st</sup> package involved people with claudication and the 2 <sup>nd</sup> package involves people with chronic limb threatening ischaemia (CLTI).</p><p><strong>Conclusions: </strong>A platform PAD trial involves many challenges in terms of both design and delivery. The proposed design involving both people with claudication and CLTI will hopefully act as a blueprint for future work in this area.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"24"},"PeriodicalIF":0.0,"publicationDate":"2024-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11391191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142302809","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}
Helen Twohig, Ram Bajpai, Nadia Corp, A. Faux-Nightingale, Christian Mallen, Toni Robinson, Glenys Somayajula, Danielle van-Der-Windt, Victoria Welsh, Claire Burton
{"title":"Long-term outcomes of COVID-19 infection in children and young people: a systematic review and meta-analysis","authors":"Helen Twohig, Ram Bajpai, Nadia Corp, A. Faux-Nightingale, Christian Mallen, Toni Robinson, Glenys Somayajula, Danielle van-Der-Windt, Victoria Welsh, Claire Burton","doi":"10.3310/nihropenres.13549.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13549.1","url":null,"abstract":"Background Children and young people (CYP) may experience prolonged symptoms following COVID-19, commonly termed ‘Long-COVID’. The characteristics of Long-COVID in CYP are unclear, as are the sequalae of acute COVID-19. We aimed to systematically synthesise evidence of the long-term outcomes of COVID-19 in CYP. Methods 13 electronic databases were searched until January 2022. Inclusion criteria: observational studies reporting outcomes occurring four-weeks or more after COVID-19 in children <18 years old. Exclusion criteria: outcomes of Paediatric Inflammatory Multisystem Syndrome. Title, abstract and full text screening were conducted independently by two reviewers. Data extraction and risk of bias assessment was by one reviewer with independent verification. Critical appraisal tools appropriate for study type were employed. Results were narratively synthesised with meta-analysis to generate summary estimates of risk of prolonged symptoms in CYP. Results 94 studies were included in this systematic review. Of these, 66 studies recruited from hospital settings and 8 studies recruited solely from community settings. Over 100 symptoms were reported, the most common being fatigue, headache and cognitive symptoms. Summary estimates of prevalence of prolonged symptoms were higher for hospital samples (31.2%, 95% CI 20.3% to 43.2%) than for community samples (4.6%, 95% CI 3.4% to 5.8). Reported sequalae of COVID-19 in CYP included stroke, type-1 diabetes, Guillan-Barre syndrome, and persistent radiological or blood test abnormalities. Most studies reporting these sequalae were case reports / case series and the quality of evidence in these studies was low. Conclusions Prolonged symptoms following COVID-19 in children are variable and multi-systemic. Rates of prolonged symptoms in community samples are lower than hospital samples. There is currently limited good quality data on other sequalae in CYP. Heterogeneity in methods of diagnosis of COVID-19, symptom classification, assessment method and duration of follow-up made synthesis less secure.","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"2 2","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140660554","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tracy L Finch, Leah Bührmann, Sebastian Potthoff, Carl R May, Beckie Gibson, Jiri Gumancik, Oliver Wilson-Dickson, M. Girling, Tim Rapley
{"title":"Systematic review of applications and properties of the NoMAD instrument for assessing implementation outcomes: Study protocol","authors":"Tracy L Finch, Leah Bührmann, Sebastian Potthoff, Carl R May, Beckie Gibson, Jiri Gumancik, Oliver Wilson-Dickson, M. Girling, Tim Rapley","doi":"10.3310/nihropenres.13559.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13559.1","url":null,"abstract":"Background Implementation outcomes measures can be used to assess the implementation of complex health and social care interventions, but evidence for the use of these measures, and their psychometric properties, remains limited. The NoMAD (Normalisation Measure Development) survey, based on Normalisation Process Theory, was developed to assess, monitor, or measure factors likely to affect normalisation of a new practice from the perspective of participants who are engaged in an implementation process. Since publication in 2015, NoMAD has been translated into several languages and is increasingly being used in health and care research. This systematic review will identify, appraise, and synthesise the existing literature on the use of NoMAD as an implementation outcome measure, focusing on use and application across different studies and settings, and on its properties as a measurement tool. Methods We will systematically search the bibliographic databases Web of Science, Scopus and PubMed for articles reporting empirical data in peer-reviewed journals. A citation search will also be undertaken in Google Scholar for primary NoMAD publications. Studies will be eligible for inclusion if they: (a) specify using NoMAD as a method and report results from using it, and/or (b) report a translation and/or validation study of NoMAD’s measurement properties. Screening of abstracts and full text articles will be done independently by two researchers. Data extraction will be structured to allow collection and descriptive synthesis of data on study characteristics, use of NoMAD, psychometric results, and authors’ reflections and recommendations. Conclusions This review will provide the first synthesis of how NoMAD has been applied in health and care research, and evidence on its properties as an outcome measure since its publication. This will be used to update existing freely accessible guidance for researchers and other users, and disseminated through peer-reviewed publications, and engagement activities with researchers and practitioners.","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":" 10","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140690028","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J. Matthewman, Kirsty Andresen, Anne Suffel, Liang-Yu Lin, Anna Schultze, J. Tazare, K. Bhaskaran, Elizabeth Williamson, R. Costello, Jennifer Quint, H. Strongman
{"title":"Checklist and guidance on creating codelists for electronic health records research","authors":"J. Matthewman, Kirsty Andresen, Anne Suffel, Liang-Yu Lin, Anna Schultze, J. Tazare, K. Bhaskaran, Elizabeth Williamson, R. Costello, Jennifer Quint, H. Strongman","doi":"10.3310/nihropenres.13550.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13550.1","url":null,"abstract":"Background Codelists are required to extract meaningful information on characteristics and events from electronic health records (EHRs). EHR research relies on codelists to define study populations and variables, thus, trustworthy codelists are important. Here, we provide a checklist, in the style of commonly used reporting guidelines, to help researchers adhere to best practice in codelist development and sharing. Methods Based on a literature search and a workshop with experienced EHR researchers we created a set of recommendations that are 1. broadly applicable to different datasets, research questions, and methods of codelist creation; 2. easy to follow, implement and document by an individual researcher, and 3. fit within a step-by-step process. We then formatted these recommendations into a checklist. Results We have created a 9-step checklist, comprising 26 items, with accompanying guidance on each step. The checklist advises on which metadata to provide, how to define a clinical concept, how to identify and evaluate existing codelists, how to create new codelists, and how to review, finalise, and publish a created codelist. Conclusions Use of the checklist can reassure researchers that best practice was followed during the development of their codelists, increasing trust in research that relies on these codelists and facilitating wider re-use and adaptation by other researchers.","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"220 S712","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140693243","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Strengths-based practice in adult social care: Understanding implementation","authors":"Sharanya Mahesh, Ila Bharatan, Robin Miller","doi":"10.3310/nihropenres.13532.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13532.1","url":null,"abstract":"Background There has been increasing emphasis towards adopting strengths-based practice (SBP) within adult social care in England. Whilst there is agreement that SBP is the right approach to discharge adult social care duties, there is limited evidence regarding the implementation of SBP. This paper presents findings from the evaluation of the implementation of SBP in fourteen local authorities in one region in England. Methods We employed a mixed methods research design, drawing on data from a scoping review, 36 interviews with practice leaders and two surveys, one with wider adult social care staff and the other, with external organisations like independent care providers and community and voluntary organisations. Our data collection and analysis were guided by two well established implementation theories: the Consolidated Framework for Implementation Research (CFIR) and Normalisation Process Theory (NPT). Interviews were analysed deductively, and surveys were analysed descriptively. Results Local authorities are at different stages in their implementation journey. The Care Act 2014 and support for SBP demonstrated by key professional groups were seen as major drivers for implementing SBP. Whilst SBP resonated with the professional principles of social workers and occupational therapists, staff did not always have the confidence and skills to adapt to SBP. Changing paperwork and recording systems, providing training opportunities to develop staff competencies, establishing new care pathways, genuine co-production, and senior management buy-in were key enablers supporting implementation. Conclusions To successfully implement SBP, a whole system approach that meaningfully collaborates with key professionals across sectors is essential. When implemented well, SBP has the potential to empower individuals by focusing on what matters to them.","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"31 25","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140696756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}