Pub Date : 2024-10-07eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13607.1
Thomas Shepherd, Christian Mallen
Background: Vaccine coverage for common infectious diseases such as Measles and Pertussis (also known as whooping cough) have been declining in England and Wales since 2014. Consequently, significant increases in Measles and Pertussis cases are observed in the community.
Aim: To explore whether Google Trends offers a predictive utility as a health surveillance tool for Meases and Pertussis in England and Wales.
Design and setting: Google search data related to Measles and Pertussis, including common associated symptoms, were downloaded for 52 weeks from 07/01/2023 - 07/01/2024. Measles and Pertussis case data were retrieved from the weekly Notification of Infectious Disease (NOID) reports.
Methods: The associations between searching and case data were explored using a time-series analyses, including cross-correlations, Prais-Winsten regression and joinpoint analysis.
Results: Significant cross-correlations were found for Measles cases and "measles" searching ( r=.41) at a lag of -1 week. For Pertussis cases, searching for "whooping cough" ( r=.31), "cough" ( r=.39), "100 day cough" ( r.41) and "vomiting" ( r=.42) were significantly correlated at a lag of -3 to -2 weeks. In multivariable regression, "measles" remained significantly associated with Measles cases (β=.24, SE=.33, p=.02) as did "whooping cough" (β=.71, SE=.27, p=.01) and "cough" (β=1.99, SE=.54, p=.001) for pertussis.
Conclusion: Increases in Measles and Pertussis cases follow increases in online searches for both diseases and selected respective symptoms. Further work is required to explore how GT can be used in conjunction with other health surveillance systems to monitor or even predict disease outbreaks, to better target public health interventions.
{"title":"Measles and Pertussis outbreaks in England and Wales: a time-series analysis.","authors":"Thomas Shepherd, Christian Mallen","doi":"10.3310/nihropenres.13607.1","DOIUrl":"10.3310/nihropenres.13607.1","url":null,"abstract":"<p><strong>Background: </strong>Vaccine coverage for common infectious diseases such as Measles and Pertussis (also known as whooping cough) have been declining in England and Wales since 2014. Consequently, significant increases in Measles and Pertussis cases are observed in the community.</p><p><strong>Aim: </strong>To explore whether Google Trends offers a predictive utility as a health surveillance tool for Meases and Pertussis in England and Wales.</p><p><strong>Design and setting: </strong>Google search data related to Measles and Pertussis, including common associated symptoms, were downloaded for 52 weeks from 07/01/2023 - 07/01/2024. Measles and Pertussis case data were retrieved from the weekly Notification of Infectious Disease (NOID) reports.</p><p><strong>Methods: </strong>The associations between searching and case data were explored using a time-series analyses, including cross-correlations, Prais-Winsten regression and joinpoint analysis.</p><p><strong>Results: </strong>Significant cross-correlations were found for Measles cases and \"measles\" searching ( <i>r=</i>.41) at a lag of -1 week. For Pertussis cases, searching for \"whooping cough\" ( <i>r</i>=.31), \"cough\" ( <i>r</i>=.39), \"100 day cough\" ( <i>r</i>.41) and \"vomiting\" ( <i>r</i>=.42) were significantly correlated at a lag of -3 to -2 weeks. In multivariable regression, \"measles\" remained significantly associated with Measles cases (β=.24, SE=.33, <i>p</i>=.02) as did \"whooping cough\" (β=.71, SE=.27, <i>p</i>=.01) and \"cough\" (β=1.99, SE=.54, <i>p</i>=.001) for pertussis.</p><p><strong>Conclusion: </strong>Increases in Measles and Pertussis cases follow increases in online searches for both diseases and selected respective symptoms. Further work is required to explore how GT can be used in conjunction with other health surveillance systems to monitor or even predict disease outbreaks, to better target public health interventions.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"56"},"PeriodicalIF":0.0,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12521895/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145310261","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}
Pub Date : 2024-09-20eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13591.1
Martina Svobodova, Liza Keating, Melanie Gager, Cherry-Ann Waldron, Sammy Ainsworth, Julie Carman, Sarah Jones, Margaret Ogden, Graham Prestwich
Background: Our patient and public involvement activities were part of a project aiming to develop a master protocol and National Institute for Health and Care research application for the PROTECT trial aiming to assess the effectiveness, implementation, and efficiency of antimicrobial stewardship interventions, to safely reduce unnecessary antibiotic usage by excluding severe bacterial infection in acutely unwell patients.
Methods: Three public involvement sessions were held with representation from young people and parents, people from diverse backgrounds and people with experience of presenting to the emergency department with undifferentiated illness. The teleconference meetings lasted between 60-90 minutes, were recorded, notes were subsequently taken, and findings summarised. The data was collected on September 13, 2023, October 14, 2023 and February 28, 2024.
Results: Working with public involvement contributors and public involvement groups at the protocol development stage provided an opportunity for the public to shape and influence the trial. We were able to establish the feasibility of the trial in the proposed setting and gain insights into how it would be perceived by potential trial participants. Antibiotic resistance was viewed as an urgent problem and research evaluating new technologies was deemed timely and important. The platform design was considered appropriate, time and cost-effective. Deferred and electronic methods of consent were viewed as acceptable if a clear and inclusive explanation is provided.
Conclusions: Having access to public contributors with relevant lived experience was an important resource for the trial team. Identification and recruitment of public contributors via working with existing public involvement groups across the UK enabled the trial team to involve public members with varied life experiences and from diverse backgrounds. This project was a good practice example of how public involvement groups and practitioners across the UK can work together to deliver public involvement that is inclusive of relevant groups.
{"title":"Patient and public involvement in the design and protocol development for a platform randomised trial to evaluate diagnostic tests to optimise antimicrobial therapy (PROTECT).","authors":"Martina Svobodova, Liza Keating, Melanie Gager, Cherry-Ann Waldron, Sammy Ainsworth, Julie Carman, Sarah Jones, Margaret Ogden, Graham Prestwich","doi":"10.3310/nihropenres.13591.1","DOIUrl":"10.3310/nihropenres.13591.1","url":null,"abstract":"<p><strong>Background: </strong>Our patient and public involvement activities were part of a project aiming to develop a master protocol and National Institute for Health and Care research application for the PROTECT trial aiming to assess the effectiveness, implementation, and efficiency of antimicrobial stewardship interventions, to safely reduce unnecessary antibiotic usage by excluding severe bacterial infection in acutely unwell patients.</p><p><strong>Methods: </strong>Three public involvement sessions were held with representation from young people and parents, people from diverse backgrounds and people with experience of presenting to the emergency department with undifferentiated illness. The teleconference meetings lasted between 60-90 minutes, were recorded, notes were subsequently taken, and findings summarised. The data was collected on September 13, 2023, October 14, 2023 and February 28, 2024.</p><p><strong>Results: </strong>Working with public involvement contributors and public involvement groups at the protocol development stage provided an opportunity for the public to shape and influence the trial. We were able to establish the feasibility of the trial in the proposed setting and gain insights into how it would be perceived by potential trial participants. Antibiotic resistance was viewed as an urgent problem and research evaluating new technologies was deemed timely and important. The platform design was considered appropriate, time and cost-effective. Deferred and electronic methods of consent were viewed as acceptable if a clear and inclusive explanation is provided.</p><p><strong>Conclusions: </strong>Having access to public contributors with relevant lived experience was an important resource for the trial team. Identification and recruitment of public contributors via working with existing public involvement groups across the UK enabled the trial team to involve public members with varied life experiences and from diverse backgrounds. This project was a good practice example of how public involvement groups and practitioners across the UK can work together to deliver public involvement that is inclusive of relevant groups.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"52"},"PeriodicalIF":0.0,"publicationDate":"2024-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11736108/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143017843","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}
Pub Date : 2024-09-18eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13550.2
Julian Matthewman, Kirsty Andresen, Anne Suffel, Liang-Yu Lin, Anna Schultze, John Tazare, Krishnan Bhaskaran, Elizabeth Williamson, Ruth Costello, Jennifer Quint, Helen Strongman
Background: Codelists are required to extract meaningful information on characteristics and events from routinely collected health data such as electronic health records. Research using routinely collected health data 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 researchers experienced in the use of routinely collected health data, 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 10-step checklist, comprising 28 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, check, 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.
{"title":"Checklist and guidance on creating codelists for routinely collected health data research.","authors":"Julian Matthewman, Kirsty Andresen, Anne Suffel, Liang-Yu Lin, Anna Schultze, John Tazare, Krishnan Bhaskaran, Elizabeth Williamson, Ruth Costello, Jennifer Quint, Helen Strongman","doi":"10.3310/nihropenres.13550.2","DOIUrl":"10.3310/nihropenres.13550.2","url":null,"abstract":"<p><strong>Background: </strong>Codelists are required to extract meaningful information on characteristics and events from routinely collected health data such as electronic health records. Research using routinely collected health data 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.</p><p><strong>Methods: </strong>Based on a literature search and a workshop with researchers experienced in the use of routinely collected health data, 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.</p><p><strong>Results: </strong>We have created a 10-step checklist, comprising 28 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, check, finalise, and publish a created codelist.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"20"},"PeriodicalIF":0.0,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437289/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142333953","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}
Pub Date : 2024-09-18eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13584.2
Chrysanthi Papoutsi, Gary Abel, Cynthia Iglesias, Jackie van Dael, Claire Reidy, Stuart D Faulkner, Helene Raynsford, Michele Siciliano, Luis Beltran Galindo, Vijay Gc, John Campbell, Trisha Greenhalgh, Sara E Shaw
Background: General practice is facing an unprecedented challenge in managing the consequences of the pandemic. In the midst of a policy drive to balance remote and in-person service provision, substantial workload pressures remain, together with increasing prevalence of long-term conditions, and declining staff numbers and morale. To address these challenges, some practices in the UK have been delivering video and hybrid group consultations (VHGCs) providing clinical care to multiple patients at the same time. Despite positive initial findings and enthusiasm, there are still gaps in our understanding of the influence VHGCs have on patient experience, healthcare utilisation, quality, safety, equity and affordability.
Objectives: To generate an in-depth understanding of VHGCs for chronic conditions in general practice, surface assumptions and sociotechnical dynamics, inform practice and extend theorisation.
Methods: Mixed-methods, multi-site research study using co-design and participatory methods, from qualitative, quantitative and cost-related perspectives. WP1 includes a national, cross-sectional survey on VHGC provision across the UK. In WP2 we will engage patients and general practice staff in co-design workshops to develop VHGC models with emphasis on digital inclusion and equity. In WP3 we will carry out a mixed-methods process evaluation in up to 10 GP practices across England (5 sites already running VHGCs and 5 comparison sites). Qualitative methods will include interviews, focus groups and ethnographic observation to examine the experiences of patients, carers, clinical and non-clinical NHS staff, commissioners and policy-makers. Quantitative methods will examine the impact of VHGCs on healthcare utilisation in primary and secondary care, patient satisfaction, engagement and activation. We will also assess value for money of group and individual care models from a health economics perspective.
Conclusions: We aim to develop transferable learning on sociotechnical change in healthcare delivery, using VHGCs as an exemplar of technology-supported innovation. Findings will also inform the design of a future study.
{"title":"Evaluating video and hybrid group consultations in general practice: mixed-methods, participatory study protocol (TOGETHER 2).","authors":"Chrysanthi Papoutsi, Gary Abel, Cynthia Iglesias, Jackie van Dael, Claire Reidy, Stuart D Faulkner, Helene Raynsford, Michele Siciliano, Luis Beltran Galindo, Vijay Gc, John Campbell, Trisha Greenhalgh, Sara E Shaw","doi":"10.3310/nihropenres.13584.2","DOIUrl":"10.3310/nihropenres.13584.2","url":null,"abstract":"<p><strong>Background: </strong>General practice is facing an unprecedented challenge in managing the consequences of the pandemic. In the midst of a policy drive to balance remote and in-person service provision, substantial workload pressures remain, together with increasing prevalence of long-term conditions, and declining staff numbers and morale. To address these challenges, some practices in the UK have been delivering video and hybrid group consultations (VHGCs) providing clinical care to multiple patients at the same time. Despite positive initial findings and enthusiasm, there are still gaps in our understanding of the influence VHGCs have on patient experience, healthcare utilisation, quality, safety, equity and affordability.</p><p><strong>Objectives: </strong>To generate an in-depth understanding of VHGCs for chronic conditions in general practice, surface assumptions and sociotechnical dynamics, inform practice and extend theorisation.</p><p><strong>Methods: </strong>Mixed-methods, multi-site research study using co-design and participatory methods, from qualitative, quantitative and cost-related perspectives. WP1 includes a national, cross-sectional survey on VHGC provision across the UK. In WP2 we will engage patients and general practice staff in co-design workshops to develop VHGC models with emphasis on digital inclusion and equity. In WP3 we will carry out a mixed-methods process evaluation in up to 10 GP practices across England (5 sites already running VHGCs and 5 comparison sites). Qualitative methods will include interviews, focus groups and ethnographic observation to examine the experiences of patients, carers, clinical and non-clinical NHS staff, commissioners and policy-makers. Quantitative methods will examine the impact of VHGCs on healthcare utilisation in primary and secondary care, patient satisfaction, engagement and activation. We will also assess value for money of group and individual care models from a health economics perspective.</p><p><strong>Conclusions: </strong>We aim to develop transferable learning on sociotechnical change in healthcare delivery, using VHGCs as an exemplar of technology-supported innovation. Findings will also inform the design of a future study.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"30"},"PeriodicalIF":0.0,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11415752/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142302810","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}
Pub Date : 2024-09-13eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13623.1
Balamrit Singh Sokhal, Sowmya Prasanna Kumar Menon, Thomas Shepherd, Sara Muller, Amit Arora, Christian Mallen
Introduction: Parkinson's disease (PD) is the most common neurodegenerative movement disorder and is associated with significant disability. The prevalence is rising, and studies have reported potential sex and race disparities in patient outcomes. Data about the demographic trends in PD-related mortality in the United States (US) is limited. This descriptive study aimed to report the national demographic trends in PD-related mortality over a 20-year period.
Methods: The US Centers for Disease Control and Prevention Wide-Ranging Online Data for Epidemiological Research (CDC-WONDER) Underlying Cause of Death database from January 1999 to December 2020 was used to determine the PD-related age adjusted mortality rate (AAMR) stratified by age, sex, ethnicity and geographic area, with the 1999 deaths as the reference group. Annual percentage change (APC) for AAMR was then calculated using Joinpoint regression.
Results: There were 515,884 PD-related deaths in the study period. The AAMR increased from 5.3 per 100,000 population in 1999 to 9.8 per 100,000 in 2020. Males had consistently higher AAMR than females and white race had consistently higher overall AAMR (7.6 per 100,000), followed by American Indians/Alaska Natives (4.4 per 100,000), Asians/Pacific Islanders (4.1 per 100,000) and Black/African Americans (3.4 per 100,000). The Midwest had the highest AAMR followed by West, South and Northeast. Utah, Idaho and Minnesota had the highest state-level AAMR.
Conclusions: This study identified significant age, sex, race and geographic disparities in PD-related mortality in the US. Older age, male sex, white race and Midwest locality were associated with the highest AAMR.
{"title":"Temporal Trends in Parkinson's Disease Related Mortality from 1999-2020: A National Analysis.","authors":"Balamrit Singh Sokhal, Sowmya Prasanna Kumar Menon, Thomas Shepherd, Sara Muller, Amit Arora, Christian Mallen","doi":"10.3310/nihropenres.13623.1","DOIUrl":"https://doi.org/10.3310/nihropenres.13623.1","url":null,"abstract":"<p><strong>Introduction: </strong>Parkinson's disease (PD) is the most common neurodegenerative movement disorder and is associated with significant disability. The prevalence is rising, and studies have reported potential sex and race disparities in patient outcomes. Data about the demographic trends in PD-related mortality in the United States (US) is limited. This descriptive study aimed to report the national demographic trends in PD-related mortality over a 20-year period.</p><p><strong>Methods: </strong>The US Centers for Disease Control and Prevention Wide-Ranging Online Data for Epidemiological Research (CDC-WONDER) Underlying Cause of Death database from January 1999 to December 2020 was used to determine the PD-related age adjusted mortality rate (AAMR) stratified by age, sex, ethnicity and geographic area, with the 1999 deaths as the reference group. Annual percentage change (APC) for AAMR was then calculated using Joinpoint regression.</p><p><strong>Results: </strong>There were 515,884 PD-related deaths in the study period. The AAMR increased from 5.3 per 100,000 population in 1999 to 9.8 per 100,000 in 2020. Males had consistently higher AAMR than females and white race had consistently higher overall AAMR (7.6 per 100,000), followed by American Indians/Alaska Natives (4.4 per 100,000), Asians/Pacific Islanders (4.1 per 100,000) and Black/African Americans (3.4 per 100,000). The Midwest had the highest AAMR followed by West, South and Northeast. Utah, Idaho and Minnesota had the highest state-level AAMR.</p><p><strong>Conclusions: </strong>This study identified significant age, sex, race and geographic disparities in PD-related mortality in the US. Older age, male sex, white race and Midwest locality were associated with the highest AAMR.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"50"},"PeriodicalIF":0.0,"publicationDate":"2024-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11739699/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143017845","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}
Background: There is strong evidence that those recruited into studies are not always representative of the population for whom the research is most relevant. Development of the study design and funding decisions are points in the research process where considerations about inclusion of under-served populations may usefully be made. Current practical guidance focuses on designing and modifying participant recruitment and retention approaches but an area that has not been addressed is recruitment site selection.
Methods: We present case studies of three NIHR funded trials to demonstrate how publicly available UK population datasets can be used to facilitate the identification of under-served communities for inclusion in trials. The trials have different designs, address different needs and demonstrate recruitment planning across Trauma centres, NHS Trusts and special educational settings.We describe our use of national freely available datasets, such as those provided by NHS Digital and the Office for National Statistics, to identify potential recruitment sites with consideration of health status, socio-economic status and ethnicity as well as clinical and risk factors to support inclusivity.For all three studies, we produced lists of potential recruitment sites in excess of the number anticipated as necessary to meet the recruitment targets.
Discussion: We reflect on the challenges to our approach and some potential future developments. The datasets used are all free to use but each has their limitations. Agreeing search parameters, acceptable proxies and identifying the appropriate datasets, then cross referencing between datasets takes considerable time and particular expertise. The case studies are trials, but the methods are generalisable for various other study types.
Conclusion: Through these exemplars, we aim to build on the NIHR INCLUDE project, by providing trialists with a much needed practical approach to embedding EDI into trial design at the grant application stage.
{"title":"Using publicly available UK datasets to identify recruitment sites to maximise inclusion of under-served groups: three case studies.","authors":"Alison Booth, Catriona McDaid, Ashley Scrimshire, Harvinder Pal Singh, Arabella Scantlebury, Catherine Hewitt","doi":"10.3310/nihropenres.13551.2","DOIUrl":"https://doi.org/10.3310/nihropenres.13551.2","url":null,"abstract":"<p><strong>Background: </strong>There is strong evidence that those recruited into studies are not always representative of the population for whom the research is most relevant. Development of the study design and funding decisions are points in the research process where considerations about inclusion of under-served populations may usefully be made. Current practical guidance focuses on designing and modifying participant recruitment and retention approaches but an area that has not been addressed is recruitment site selection.</p><p><strong>Methods: </strong>We present case studies of three NIHR funded trials to demonstrate how publicly available UK population datasets can be used to facilitate the identification of under-served communities for inclusion in trials. The trials have different designs, address different needs and demonstrate recruitment planning across Trauma centres, NHS Trusts and special educational settings.We describe our use of national freely available datasets, such as those provided by NHS Digital and the Office for National Statistics, to identify potential recruitment sites with consideration of health status, socio-economic status and ethnicity as well as clinical and risk factors to support inclusivity.For all three studies, we produced lists of potential recruitment sites in excess of the number anticipated as necessary to meet the recruitment targets.</p><p><strong>Discussion: </strong>We reflect on the challenges to our approach and some potential future developments. The datasets used are all free to use but each has their limitations. Agreeing search parameters, acceptable proxies and identifying the appropriate datasets, then cross referencing between datasets takes considerable time and particular expertise. The case studies are trials, but the methods are generalisable for various other study types.</p><p><strong>Conclusion: </strong>Through these exemplars, we aim to build on the NIHR INCLUDE project, by providing trialists with a much needed practical approach to embedding EDI into trial design at the grant application stage.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"18"},"PeriodicalIF":0.0,"publicationDate":"2024-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11320047/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627976","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}
Pub Date : 2024-09-03eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13596.2
Tom M Withers, Colin J Greaves, Matt J Bown, Faye Ashton, Aimee J Scott, Vanessa E Hollings, Ann M Elsworth, Athanasios Saratzis
Background: Abdominal aortic aneurysm (AAA) screening/surveillance is implemented widely. Those in AAA-surveillance are at high-risk of cardiovascular-events. We developed an intervention, called CRISP, using intervention-mapping, to reduce cardiovascular-risk in AAA-surveillance. This study tested the CRISP intervention in routine clinical-care.
Methods: The CRISP intervention, consisting of a nurse-led cardiovascular risk assessment and subsequent lifestyle change support using a self-care workbook and low-intensity nurse input was delivered in two screening/surveillance programmes. Those consenting to take part were followed-up with cardiovascular-assessments. Fidelity of intervention-delivery was assessed quantitatively/qualitatively.
Results: 40 men (mean age 75 ± 7 years) took part over four months and followed-up for a minimum six months. A sub-group of 25 patients and nine Health Care Professionals (HCPs) were interviewed. The median number of risk-factors that patients chose to focus on was two (range 0 to 4), with physical activity (n=17) being the most popular. Participants who had a 'red light' risk factor for stress, low mood, smoking or alcohol intake were offered a referral to appropriate services. Two were offered referral to mental-health services and took it up, three declined referrals to smoking or alcohol support services. The fidelity of intervention-delivery (a score intervention components delivered to each patient based on a score from 0 to 5, with 5 being highest delivery fidelity) was generally low. The highest mean score (on a 0-5 scale) for the nurse assessment was 1.5 for engaging the participant, lowest 0.5 for exploring the importance for selected lifestyle behaviours. In qualitative interviews, the intervention was liked by patients/HCPs. Based on qualitative interviews and observations, the low fidelity of intervention-delivery was due to intervention-training not being detailed.
Conclusions: CRISP can be delivered in AAA-surveillance, but fidelity of delivery is low. The intervention and its training need to be refined/tested before wider implementation.
{"title":"A feasibility study of the CRISP intervention; a cardiovascular risk reduction intervention in patients with an abdominal aortic aneurysm.","authors":"Tom M Withers, Colin J Greaves, Matt J Bown, Faye Ashton, Aimee J Scott, Vanessa E Hollings, Ann M Elsworth, Athanasios Saratzis","doi":"10.3310/nihropenres.13596.2","DOIUrl":"10.3310/nihropenres.13596.2","url":null,"abstract":"<p><strong>Background: </strong>Abdominal aortic aneurysm (AAA) screening/surveillance is implemented widely. Those in AAA-surveillance are at high-risk of cardiovascular-events. We developed an intervention, called CRISP, using intervention-mapping, to reduce cardiovascular-risk in AAA-surveillance. This study tested the CRISP intervention in routine clinical-care.</p><p><strong>Methods: </strong>The CRISP intervention, consisting of a nurse-led cardiovascular risk assessment and subsequent lifestyle change support using a self-care workbook and low-intensity nurse input was delivered in two screening/surveillance programmes. Those consenting to take part were followed-up with cardiovascular-assessments. Fidelity of intervention-delivery was assessed quantitatively/qualitatively.</p><p><strong>Results: </strong>40 men (mean age 75 ± 7 years) took part over four months and followed-up for a minimum six months. A sub-group of 25 patients and nine Health Care Professionals (HCPs) were interviewed. The median number of risk-factors that patients chose to focus on was two (range 0 to 4), with physical activity (n=17) being the most popular. Participants who had a 'red light' risk factor for stress, low mood, smoking or alcohol intake were offered a referral to appropriate services. Two were offered referral to mental-health services and took it up, three declined referrals to smoking or alcohol support services. The fidelity of intervention-delivery (a score intervention components delivered to each patient based on a score from 0 to 5, with 5 being highest delivery fidelity) was generally low. The highest mean score (on a 0-5 scale) for the nurse assessment was 1.5 for engaging the participant, lowest 0.5 for exploring the importance for selected lifestyle behaviours. In qualitative interviews, the intervention was liked by patients/HCPs. Based on qualitative interviews and observations, the low fidelity of intervention-delivery was due to intervention-training not being detailed.</p><p><strong>Conclusions: </strong>CRISP can be delivered in AAA-surveillance, but fidelity of delivery is low. The intervention and its training need to be refined/tested before wider implementation.</p><p><strong>Registration: </strong>ISRCTN9399399518/11/20).</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"34"},"PeriodicalIF":0.0,"publicationDate":"2024-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11489837/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142482533","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}
Pub Date : 2024-08-22eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13532.2
Sharanya Mahesh, Ila Bharatan, Robin Miller
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.
{"title":"Strengths-based practice in adult social care: Understanding implementation.","authors":"Sharanya Mahesh, Ila Bharatan, Robin Miller","doi":"10.3310/nihropenres.13532.2","DOIUrl":"10.3310/nihropenres.13532.2","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"19"},"PeriodicalIF":0.0,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11399757/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142302811","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}
Pub Date : 2024-08-19eCollection Date: 2024-01-01DOI: 10.3310/nihropenres.13523.3
Brahima A Diallo, Syreen Hassan, Nancy Kagwanja, Robinson Oyando, Jainaba Badjie, Noni Mumba, Andrew M Prentice, Pablo Perel, Anthony Etyang, Ellen Nolte, Benjamin Tsofa
Background: Hypertension is the single leading risk factor for premature death in Sub-Saharan Africa (SSA). Prevalence is high, but awareness, treatment, and control are low. Community-centred interventions show promise for effective hypertension management, but embedding such interventions sustainably requires a good understanding of the wider context within which they are being introduced. This study aims to conduct a systematic health system assessment exploring the micro (patients/carers), meso (health care workers and facilities), and macro (broader system) contexts in rural Gambia and Kenya.
Methods: This study will utilise various qualitative approaches. We will conduct (i) focus group discussions with people living with hypertensive to map a 'typical' patient journey through health systems, and (ii) in-depth interviews with patients and family carers, health care workers, decision-makers, and NCD partners to explore their experiences of managing hypertension and assess the capacity and readiness of the health systems to strengthen hypertension management. We will also review national guidelines and policy documents to map the organisation of services and guidance on hypertension management. We will use thematic analysis to analyse data, guided by the cumulative complexity model, and theories of organisational readiness and dissemination of innovations.
Expected findings: This study will describe the current context for the management of hypertension from the perspective of those involved in seeking (patients), delivering (health care workers) and overseeing (decision-makers) health services in rural Gambia and Kenya. It will juxtapose what should be happening according to health system guidance and what is happening in practice, drawing on the experiences of study participants. It will outline the various barriers to and facilitators of hypertension management, as perceived by patients, providers, and decision-makers, and the conditions that would need to be in place for effective and sustainable implementation of a community-centred intervention to improve the management of hypertension in rural settings.
{"title":"Managing hypertension in rural Gambia and Kenya: Protocol for a qualitative study exploring the experiences of patients, health care workers, and decision-makers.","authors":"Brahima A Diallo, Syreen Hassan, Nancy Kagwanja, Robinson Oyando, Jainaba Badjie, Noni Mumba, Andrew M Prentice, Pablo Perel, Anthony Etyang, Ellen Nolte, Benjamin Tsofa","doi":"10.3310/nihropenres.13523.3","DOIUrl":"10.3310/nihropenres.13523.3","url":null,"abstract":"<p><strong>Background: </strong>Hypertension is the single leading risk factor for premature death in Sub-Saharan Africa (SSA). Prevalence is high, but awareness, treatment, and control are low. Community-centred interventions show promise for effective hypertension management, but embedding such interventions sustainably requires a good understanding of the wider context within which they are being introduced. This study aims to conduct a systematic health system assessment exploring the micro (patients/carers), meso (health care workers and facilities), and macro (broader system) contexts in rural Gambia and Kenya.</p><p><strong>Methods: </strong>This study will utilise various qualitative approaches. We will conduct (i) focus group discussions with people living with hypertensive to map a 'typical' patient journey through health systems, and (ii) in-depth interviews with patients and family carers, health care workers, decision-makers, and NCD partners to explore their experiences of managing hypertension and assess the capacity and readiness of the health systems to strengthen hypertension management. We will also review national guidelines and policy documents to map the organisation of services and guidance on hypertension management. We will use thematic analysis to analyse data, guided by the cumulative complexity model, and theories of organisational readiness and dissemination of innovations.</p><p><strong>Expected findings: </strong>This study will describe the current context for the management of hypertension from the perspective of those involved in seeking (patients), delivering (health care workers) and overseeing (decision-makers) health services in rural Gambia and Kenya. It will juxtapose what should be happening according to health system guidance and what is happening in practice, drawing on the experiences of study participants. It will outline the various barriers to and facilitators of hypertension management, as perceived by patients, providers, and decision-makers, and the conditions that would need to be in place for effective and sustainable implementation of a community-centred intervention to improve the management of hypertension in rural settings.</p>","PeriodicalId":74312,"journal":{"name":"NIHR open research","volume":"4 ","pages":"5"},"PeriodicalIF":0.0,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11375402/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142141945","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}
Methods: In this pragmatic, multi-site, open, randomised controlled trial, we recruited adults aged ≥65 years with ≥2 long-term conditions from 15 primary care practices in England and Wales. Participants were randomly assigned to usual care control or a 12-week, group-based, GYY programme delivered face-to-face or online by qualified yoga teachers. The primary outcome was HRQOL (EQ-5D-5L) over 12 months. Secondary outcomes included anxiety, depression, falls, loneliness, healthcare resource use, and adverse events.
Results: Between October 2019 and October 2021, 454 participants were randomised between the intervention (n=240) and control (n=214) groups. Seven GYY courses were delivered face-to-face and 12 courses were delivered online. The mean number of classes attended among all intervention participants was nine (SD 4, median 10). In our intention-to-treat analysis (n=422), there was no statistically significant difference between trial groups in the primary outcome of HRQOL (adjusted difference in mean EQ-5D-5L = 0.020 [favouring intervention]; 95% CI -0.006 to 0.045, p=0.14). There were also no statistically significant differences in key secondary outcomes. No serious, related adverse events were reported. The incremental cost-effectiveness ratio was £4,546 per quality-adjusted life-year (QALY) and the intervention had a 79% probability of being cost-effective at a willingness-to-pay threshold of £20,000 per QALY. The intervention was acceptable to most participants and perceived as useful by some.
Conclusions: The offer of a 12-week chair-based yoga programme in addition to usual care did not improve HRQOL in older adults with multiple long-term conditions. However, the intervention was safe, acceptable, and probably cost-effective.