Sarah K Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd, Raja Mukherjee, Penny A Cook, Cheryl McQuire
{"title":"Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility.","authors":"Sarah K Harding, Beverley Samways, Amy Dillon, Sandra Butcher, Andy Boyd, Raja Mukherjee, Penny A Cook, Cheryl McQuire","doi":"10.23889/ijpds.v9i1.2381","DOIUrl":"10.23889/ijpds.v9i1.2381","url":null,"abstract":"<p><strong>Introduction: </strong>Fetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK.</p><p><strong>Objective: </strong>To conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK.</p><p><strong>Methods: </strong>We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N = 5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N = 17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.</p><p><strong>Results: </strong>Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses.</p><p><strong>Conclusions: </strong>Multi-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"6 1","pages":"2381"},"PeriodicalIF":1.6,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11636589/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142819457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Residential mobility amongst children and young people in Wales: A longitudinal study using linked administrative records.","authors":"Jo Davies, Rowena Bailey, Amy Mizen, Theordora Pouliou, Richard Fry, Rebecca Pedrick-Case, Gareth Stratton, Rhodri Johnson, Hayley Christian, Ronan Lyons, Lucy Griffiths","doi":"10.23889/ijpds.v9i1.2398","DOIUrl":"https://doi.org/10.23889/ijpds.v9i1.2398","url":null,"abstract":"<p><strong>Background: </strong>Child poverty remains a major global concern and a child's experience of deprivation is heavily shaped by where they live and the stability of their local neighbourhood. This study examines frequencies and patterns of residential mobility in children and young people (CYP) at a population level using novel geospatial techniques to assess how often their physical environment changes and to identify geographical variations in social mobility.</p><p><strong>Methods: </strong>We used routinely collected administrative records held in the Secure Anonymised Information Linkage (SAIL) Databank for CYP aged under 18 years living in Wales between 2012 and 2022. We calculated the Moran's I statistic to assess the magnitude of Lower layer Super Output Area (LSOA)-level geographic variation in residential mobility and used the Local Indicator of Spatial Association (LISA) to identify clusters of LSOAs where there are higher rates of residential mobility.</p><p><strong>Results: </strong>This study included 923,531 CYP, with 58% having moved at least once during the study period. A total number of 1,209,102 house moves were recorded, 59% of which occurred between the ages of 0 and 5 years. Almost 10% of the cohort resided in five or more dwellings before the age of 18 years. In terms of area-level (LSOA) deprivation, 75% of house moves were to areas with the same or higher levels of deprivation, leaving only 25% of house moves that achieved upward social mobility. Clustering of residential mobility was identified predominantly in areas of high deprivation.</p><p><strong>Conclusion: </strong>The findings of this study show that residential mobility is linked with socio-economic circumstances and is experienced by over half of CYP in Wales. Understanding where CYP live, their mobility patterns and which areas have high levels of influx and efflux is crucial for policymakers to generate well-informed, targeted and effective child-focused interventions.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"6 1","pages":"2398"},"PeriodicalIF":1.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11606628/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773211","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}
Mike Seaborne, Hope Jones, Neil Cockburn, Stevo Durbaba, Arturo González-Izquierdo, Amy Hough, Dan Mason, Carlos Sánchez-Soriano, Chris Orton, Armando Méndez-Villalon, Tom Giles, David Ford, Phillip Quinlan, Krish Nirantharakumar, Lucilla Poston, Rebecca Reynolds, Gillian Santorelli, Sinead Brophy
{"title":"Mother and Infant Research Electronic Data Analysis (MIREDA): A protocol for creating a common data model for federated analysis of UK birth cohorts and the life course.","authors":"Mike Seaborne, Hope Jones, Neil Cockburn, Stevo Durbaba, Arturo González-Izquierdo, Amy Hough, Dan Mason, Carlos Sánchez-Soriano, Chris Orton, Armando Méndez-Villalon, Tom Giles, David Ford, Phillip Quinlan, Krish Nirantharakumar, Lucilla Poston, Rebecca Reynolds, Gillian Santorelli, Sinead Brophy","doi":"10.23889/ijpds.v9i2.2406","DOIUrl":"https://doi.org/10.23889/ijpds.v9i2.2406","url":null,"abstract":"<p><strong>Introduction: </strong>Birth cohorts are valuable resources for studying early life, the determinants of health, disease, and development. They are essential for studying life course. Dynamic longitudinal electronic cohorts use routinely collected data, are live, and can reduce selection bias specifically associated with direct recruitment in traditional birth cohorts. However, they are limited to health and administrative data and may lack contextual information.The MIREDA (Mother and Infant Research Electronic Data Analysis) partnership creates a UK-wide birth cohort by aligning existing electronic birth cohorts to have the same structure, content, and vocabularies, enabling UK-wide federated analyses.</p><p><strong>Objectives: </strong>Create a core dynamic, live UK-wide electronic birth cohort with approximately 500,000 new births per year using a common data model (CDM).Provide data linkage and automation for long-term follow up of births from the Clinical Practice Research Datalink (CPRD), MuM-PreDiCT and the 'Born in' initiatives of Bradford, Wales, Scotland, and South London for comparable analyses.</p><p><strong>Methods: </strong>We will establish core data content and collate linkable data. A suite of extraction, transformation, and load (ETL) tools will be used to transform data for each birth cohort into the CDM. Transformed datasets will remain within each cohort's trusted research environment (TRE). Metadata will be uploaded for the public to the Health Data Research (HDRUK) Innovation Gateway. We will develop a single online data access request for researchers. A cohort profile will be developed for researchers to reference the resource.</p><p><strong>Ethics: </strong>Each cohort has approval from their TRE through compliance with their project application processes and information governance.</p><p><strong>Dissemination: </strong>We will engage with researchers in the field to promote our resource through partnership networking, publication, research collaborations, conferences, social media, and marketing communications strategies.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 2","pages":"2406"},"PeriodicalIF":1.6,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12039474/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144048647","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}
Alix Bukkfalvi-Cadotte, Ashra Khanom, Amy Brown, Helen Snooks
{"title":"Maternity care experiences and outcomes of people seeking sanctuary in Wales: a data linkage study protocol.","authors":"Alix Bukkfalvi-Cadotte, Ashra Khanom, Amy Brown, Helen Snooks","doi":"10.23889/ijpds.v9i2.2399","DOIUrl":"https://doi.org/10.23889/ijpds.v9i2.2399","url":null,"abstract":"<p><strong>Introduction: </strong>People seeking sanctuary, including refugees and asylum seekers, face barriers and challenges in accessing high quality healthcare. In maternity care specifically, asylum-seeking and refugee women are less likely to access timely and adequate antenatal care and may be more likely to experience adverse perinatal outcomes.</p><p><strong>Objectives: </strong>We aim to describe maternity care service users seeking sanctuary in Wales and determine whether their perinatal health outcomes and use of maternity care services differ from women born in the UK.</p><p><strong>Methods: </strong>We will conduct a retrospective cohort study. Linking six datasets held by SAIL Databank, we will identify individuals recorded as refugees or asylum seekers in General Practitioner (GP) records. We will conduct a descriptive analysis of their demographic and health characteristics and conduct a comparative analysis of maternity care service use and perinatal health outcomes between refugees and asylum seekers and UK-born individuals. We will identify statistically significant differences between groups, and where the completeness and quality of the data allow, we will adjust for known covariates.</p><p><strong>Results: </strong>This study will enable us to report on the characteristics of maternity care service users seeking sanctuary in Wales, their maternity care service use and perinatal health outcomes compared to UK-born women.</p><p><strong>Conclusions: </strong>This data linkage study will enhance our understanding of health inequities in maternity care and perinatal outcomes related to asylum seeker or refugee status. Results will inform policy and practice to improve provision of maternity care to women seeking sanctuary.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 2","pages":"2399"},"PeriodicalIF":1.6,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12046472/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143986523","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}
Waleed Mohamed Abdeldayem, Jo Davies, Lucy Jane Griffiths
{"title":"Obesity at the age of 4-5 related to asthma diagnosis in later childhood: A longitudinal study using linked routinely collected data from Wales.","authors":"Waleed Mohamed Abdeldayem, Jo Davies, Lucy Jane Griffiths","doi":"10.23889/ijpds.v9i1.2374","DOIUrl":"10.23889/ijpds.v9i1.2374","url":null,"abstract":"<p><strong>Introduction: </strong>Obesity and asthma are two of the most common childhood conditions and their prevalence have increased over the last decades. Several cross-sectional studies provide strong evidence for a positive association between these two conditions. However, few longitudinal studies have examined the temporal relationship between them.</p><p><strong>Objective: </strong>To examine the relationship between body mass index (BMI) at school starting age and the risk of developing bronchial asthma later in childhood.</p><p><strong>Methods: </strong>We used anthropometric measurements of children aged 4 to 5 years, obtained as part of a national surveillance programme in Wales, linked to multiple population-level longitudinal administrative and clinical datasets within a trusted research environment provided by the Secure Anonymised Information Linkage (SAIL) databank to examine whether obesity at age 4 to 5 years was associated with increased risk of having a recorded diagnosis of asthma during a nine year follow-up period.</p><p><strong>Results: </strong>Out of 22,790 children included in the study, 7% had a recorded diagnosis of asthma during the nine years following anthropometric measurement. Children who were classified as obese (Body Mass Index [BMI] Z-score ≥98<sup>th</sup> Centile) had a 41% increased risk of having a recorded diagnosis of asthma (adjusted odds ratio [aOR]: 1.41; 95% confidence interval [CI]: 1.17-1.7). Females were 26% less likely to have a recorded diagnosis of asthma after adjusting for weight status and deprivation index (aOR: 0.74; 95% CI: 0.67-0.82).</p><p><strong>Conclusion: </strong>Obesity in children aged 4 to 5 years carries an increased risk of developing asthma. Anthropometric measurements obtained through standardised population-level surveillance programmes enable important research which would not be possible otherwise and expanding these programmes to older age groups is recommended. Lifestyle interventions aimed at weight loss may have a role in decreasing the risk of developing asthma.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 1","pages":"2374"},"PeriodicalIF":1.6,"publicationDate":"2024-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11636590/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142819442","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}
Amanda Clery, Catherine Bunting, Mengyun Liu, Katie Harron, Jenny Woodman, Louise Mc Grath-Lone
{"title":"Can administrative data be used to research health visiting in England? A completeness assessment of the Community Services Dataset.","authors":"Amanda Clery, Catherine Bunting, Mengyun Liu, Katie Harron, Jenny Woodman, Louise Mc Grath-Lone","doi":"10.23889/ijpds.v9i1.2385","DOIUrl":"10.23889/ijpds.v9i1.2385","url":null,"abstract":"<p><strong>Introduction: </strong>Health visiting is a community service provided to families with children under five in England and is a key focus of early years policy. Individual-level data on health visiting is captured in the Community Services Data Set (CSDS), an administrative dataset of publicly funded community services across England. Analyses of CSDS are considered experimental as the dataset matures.</p><p><strong>Objectives: </strong>In this study, we aimed to identify health visiting contacts in the CSDS and assess the completeness of these data from 2016/17 to 2019/20 compared to external reference data.</p><p><strong>Methods: </strong>We identified the number of the four mandated postnatal health visiting contacts delivered, excluding those scheduled but not attended, between April 2016 and March 2020. We compared counts by local authority (LA) and financial quarter against the Office for Health Improvement and Disparities' Health Visitor Service Delivery Metrics (HVSDM) to identify a subnational subset of complete CSDS data. We explored the representativeness of this subset.</p><p><strong>Results: </strong>During the study period, 10.2 million health visiting contacts were delivered to 2.4 million children in England. Of these, we identified 3.9 million mandated contacts based on CSDS codes and age at time of contact, which represented 44.7% of all mandated contacts reported in the HVSDM for the same period. There were 63 LAs with complete CSDS data in at least one quarter, which were broadly representative of English LAs overall. Variables related to staff characteristics were highly missing and only 13 LAs had four or more successive quarters of complete data needed for longitudinal, child-level analyses.</p><p><strong>Conclusions: </strong>We identified a subnational subset of complete CSDS data, compared to external reference data, which can be used for health visiting research. Until improvements are made to its completeness, analyses (particularly those requiring longitudinal data) may not be generalisable to the whole child population.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 1","pages":"2385"},"PeriodicalIF":1.6,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11626512/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142802532","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}
Georgina Ireland, Linda Wijlaars, Matthew Jay, Qi Feng, Katie Harron, Claire Grant, Ruth Gilbert
{"title":"Linkage of administrative family court care proceedings and hospital records for mothers in England: linkage accuracy and cumulative incidence of family court care proceedings after a first live birth.","authors":"Georgina Ireland, Linda Wijlaars, Matthew Jay, Qi Feng, Katie Harron, Claire Grant, Ruth Gilbert","doi":"10.23889/ijpds.v9i2.2404","DOIUrl":"https://doi.org/10.23889/ijpds.v9i2.2404","url":null,"abstract":"<p><strong>Introduction: </strong>Linkage of public law family court care proceedings (CP) data to all women giving birth in NHS hospitals in England allows calculation of the cumulative incidence of CP involvement for mothers with first children born.</p><p><strong>Objectives: </strong>To assess linkage accuracy and determine the 10-year cumulative incidence of CP after a first live birth (FLB) for population subgroups.</p><p><strong>Method: </strong>NHS England linked records for mothers in Cafcass (Children and Family Court Advisory and Support Service) involved in CP (2007-2021) to all mothers with a delivery in England using Hospital Episode Statistics (HES: 1997-21). We calculated match rates and assessed indirect evidence of potential false positive and missed links. We used survival analyses to estimate cumulative incidence of CP within 10 years overall and for five-year maternal age groups at first live birth.</p><p><strong>Results: </strong>Of 120,937 mothers involved in CP, 6.6% (n = 8,010) were excluded due to missing postcode or date of birth, or age <15 or >50. Of the remaining 112,927 mothers, 92,891 (82.8%) were linked to a HES delivery record. Match rates were lowest for mothers with an ethnic minority background, older at first case, or residing in Greater London, but improved over time.Of 3,572,737 mothers with a FLB, 38,462 had CP involvement. The cumulative incidence of CP at 10 years from FLB was 1.31% (95% Confidence Interval [CI]; 1.29-1.32) overall and highest in mothers aged 15-19 years (6.79%, 95% CI: 6.69-6.89) and those living in the most deprived areas (2.47%, 95% CI: 2.43-2.51).</p><p><strong>Conclusion: </strong>One in 77 of all mothers and one in 15 aged less than 20 at first live birth were involved in CP within 10 years. Linkage error may underestimate the incidence of CP for mothers in London or with an ethnic minority background.</p><p><strong>Key points: </strong>Overall, 82.8% of women recorded as a mother in Cafcass care proceedings were linked to a hospital delivery record.Match rates were lowest for mothers with an ethnic minority background, older age at first child, or residing in Greater London.1.3% of all mothers (1 in 77) with a first birth were involved in care proceedings within 10 years and 6.8% (1 in 15) of mothers aged <20 at first live birth.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 2","pages":"2404"},"PeriodicalIF":1.6,"publicationDate":"2024-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12042068/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144047575","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}
Ava Phillips, Ray Leal, Amelia Jewell, Ira Madan, Johnny Downs, Matthew Broadbent, Matthew Hotopf, Sarah Dorrington, Nicola T Fear, Sharon A M Stevelink
{"title":"Cohort profile: working age adults accessing secondary mental health services in South London (UK) and benefits - a data linkage of electronic mental health records and benefits data.","authors":"Ava Phillips, Ray Leal, Amelia Jewell, Ira Madan, Johnny Downs, Matthew Broadbent, Matthew Hotopf, Sarah Dorrington, Nicola T Fear, Sharon A M Stevelink","doi":"10.23889/ijpds.v9i1.2377","DOIUrl":"https://doi.org/10.23889/ijpds.v9i1.2377","url":null,"abstract":"<p><strong>Introduction: </strong>In the UK, mental disorders are one of the most common reasons for claiming a benefit relating to unemployment, income, sickness and disability. Limited information exists regarding the demographic characteristics and psychiatric profiles of working age individuals claiming benefits in London. Until recently, detailed data on both mental disorders and benefit receipt were unavailable.</p><p><strong>Objectives: </strong>To establish and describe a cohort of working age adults accessing secondary mental health services and benefits related to unemployment, income, sickness, and disability.</p><p><strong>Methods: </strong>Using a novel data linkage containing electronic secondary mental health records from the South London and Maudsley (SLaM) NHS Foundation Trust and benefits data from the Department for Work and Pensions (DWP), we present descriptive statistics on sociodemographics, psychiatric diagnoses, and benefits received among a cohort of working age adults. The DWP benefits data window covers the period January 2007-June 2020, the SLaM data window covers the period January 2007-June 2019.</p><p><strong>Results: </strong>We identified n <i>=</i> 150,348 patients (18-65 years), who had attended SLaM secondary mental health services, 78.3% of which had received a benefit relating to unemployment, income, sickness and disability. Of this group, 68% had a recorded primary psychiatric diagnosis. We found that a much higher percentage of those with a primary psychiatric diagnosis received more than one benefit (69.4%) compared to those who had not received a primary psychiatric diagnosis (30.6%). Almost 70% of claimants who obtained more than one benefit were identified as living within the two quintiles representing the highest levels of deprivation in the South-east London boroughs served by SLaM.</p><p><strong>Conclusions: </strong>We showed types of benefits received among working age adults accessing secondary mental health services. This cohort will be further examined to explore trajectories of mental health care and benefit receipt and provide evidence that will help to inform both DWP policies and mental health care delivery.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 1","pages":"2377"},"PeriodicalIF":1.6,"publicationDate":"2024-05-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11606588/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773196","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}
Naomi C Hamm, Ruth Ann Marrie, Depeng Jiang, Pourang Irani, Lisa M Lix
{"title":"Trend control charts for multiple sclerosis case definitions.","authors":"Naomi C Hamm, Ruth Ann Marrie, Depeng Jiang, Pourang Irani, Lisa M Lix","doi":"10.23889/ijpds.v9i1.2358","DOIUrl":"https://doi.org/10.23889/ijpds.v9i1.2358","url":null,"abstract":"<p><strong>Introduction: </strong>The validity of chronic disease case definitions for administrative health data may change over time due to changes in data quality. Trend control charts to identify out-of-control (OOC; i.e., unexpected) observations in a time series may indicate where disease estimates are influenced by changes in data quality.</p><p><strong>Objective: </strong>Apply and compare trend control charts methods for multiple sclerosis (MS) incidence and prevalence estimates using previously-validated case definitions for Manitoba, Canada.</p><p><strong>Methods: </strong>Eight case definitions were identified from published literature and applied to Manitoba administrative health data from January 1, 1972 to December 31, 2018. Incidence and prevalence trends were modeled using negative binomial and generalized estimating equation models, respectively. Trend control charts were used to plot predicted case counts against observed case counts. Control limits to identify OOC observations were calculated using two methods: predicted case count ±0.8*standard deviation (0.8*SD) and predicted case count ±2*standard deviation (2*SD). Differences in proportion of OOC observations across case definitions was assessed using McNemar's test.</p><p><strong>Results: </strong>The proportion of OOC observations ranged from 0.71 to 0.90 for incidence and 0.72 to 0.98 for prevalence when using the 0.8*SD control limits. A lower proportion of OOC observations (0.46 to 0.74 for incidence; 0.30 to 0.74 for prevalence) was observed for the 2*SD control limits. Neither method resulted in significant differences in OOC observations across case definitions.</p><p><strong>Conclusions: </strong>The proportion of OOC observations in trend control charts varied with the control limit method adopted, but statistical significance did not. Trend control charts are a potentially useful tool for developing surveillance methods, but may benefit from disease-specific calibrated control limits.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 1","pages":"2358"},"PeriodicalIF":1.6,"publicationDate":"2024-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11606511/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142773208","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}
Mohinder Sarna, Belaynew Taye, Huong Le, Fiona Giannini, Kathryn Glass, Christopher C Blyth, Peter Richmond, Rebecca Glauert, Avram Levy, Hannah C Moore
{"title":"Cohort profile: A population-based record linkage platform to address critical epidemiological evidence gaps in respiratory syncytial virus and other respiratory infections.","authors":"Mohinder Sarna, Belaynew Taye, Huong Le, Fiona Giannini, Kathryn Glass, Christopher C Blyth, Peter Richmond, Rebecca Glauert, Avram Levy, Hannah C Moore","doi":"10.23889/ijpds.v9i2.2376","DOIUrl":"10.23889/ijpds.v9i2.2376","url":null,"abstract":"<p><strong>Introduction: </strong>The Western Australia (WA) Respiratory Infections Linked Data Platform is a population-based cohort established to investigate the epidemiology of RSV and other respiratory infections in children aged 0-10 years, incorporating microbiological testing patterns, hospital admissions, emergency department presentations, and socio-demographic data.</p><p><strong>Methods: </strong>The cohort was formed through individual linkages between datasets from the WA Department of Health including the Birth and Death Registry, Midwives Notification System (MNS), Hospital Morbidity Data Collection, Emergency Department Data Collection, WA Notifiable Diseases Database, WA Register of Developmental Anomalies, WA Cerebral Palsy Register, WA Antenatal Vaccination Database, WA Family Connections, and PathWest Respiratory Virus Surveillance Data. Hospitalisations and emergency department presentations were temporally linked to routine respiratory viral surveillance data.</p><p><strong>Results: </strong>The cohort consists of 368,830 WA births between 1 January 2010 and 31 December 2020 with accompanying perinatal and demographic data, and with secondary care follow-up to 30 June 2022. Of these births, 24,660 (6.7%) identify as Aboriginal. A total of 4,077 (1.1%) children died from all causes during the study period (2010-2020), and 9.2% (33,818) of children were born preterm (<37 weeks).</p><p><strong>Conclusion: </strong>The Respiratory Infections Linked Data Platform enables epidemiological investigations, identifying virus-specific risk groups, risk factors, clinical presentation, viral testing patterns, long-term impacts and accurate measures of viral incidence rates in risk and population sub-groups This will not only aid in the calculation of cost-effectiveness estimates of interventions such as immunisations, but also provide guidance for design and implementation of such programs to priority groups. The Respiratory Infections Linked Data Platform will also enable evaluation of the direct and indirect effects of maternal and infant vaccines and new therapeutics. Analyses using this platform will also generate epidemiological data needed for other respiratory viruses on the vaccine pipeline such as parainfluenza virus and human metapneumovirus.</p>","PeriodicalId":36483,"journal":{"name":"International Journal of Population Data Science","volume":"9 2","pages":"2376"},"PeriodicalIF":1.6,"publicationDate":"2024-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11951244/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143755011","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}