Longitudinal Linkage Research Articles

MP17-02 ASSOCIATION BETWEEN THE DECIPHER GENOMIC CLASSIFIER AND PROSTATE CANCER OUTCOME IN A LARGE-SCALE REAL-WORLD DATASET

You have accessJournal of UrologyCME1 Apr 2023MP17-02 ASSOCIATION BETWEEN THE DECIPHER GENOMIC CLASSIFIER AND PROSTATE CANCER OUTCOME IN A LARGE-SCALE REAL-WORLD DATASET Michael Leapman, Julian Ho, Yang Liu, Xin Zhao, Alexander Hakansson, James Proudfoot, Elai Davicioni, Darryl Martin, Yi An, Tyler Seibert, Daniel Spratt, Matthew Cooperberg, Preston Sprenkle, and Ashley Ross Michael LeapmanMichael Leapman More articles by this author , Julian HoJulian Ho More articles by this author , Yang LiuYang Liu More articles by this author , Xin ZhaoXin Zhao More articles by this author , Alexander HakanssonAlexander Hakansson More articles by this author , James ProudfootJames Proudfoot More articles by this author , Elai DavicioniElai Davicioni More articles by this author , Darryl MartinDarryl Martin More articles by this author , Yi AnYi An More articles by this author , Tyler SeibertTyler Seibert More articles by this author , Daniel SprattDaniel Spratt More articles by this author , Matthew CooperbergMatthew Cooperberg More articles by this author , Preston SprenklePreston Sprenkle More articles by this author , and Ashley RossAshley Ross More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003237.02AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Although the prognostic significance of the Decipher genomic classifier (GC) has been established in the context of randomized clinical trials and institutional cohorts, less is known about the associations between Decipher testing and oncologic outcomes among patients treated in the real-world practice setting. METHODS: We conducted a retrospective cohort study using a novel longitudinal linkage of transcriptomic data from the Decipher GC and real-world clinical data (RWD) aggregated from insurance claims, pharmacy records, and electronic health record data across payors and sites of care. We assessed the associations between Decipher test results and biochemical recurrence (BCR) and metastasis after radical prostatectomy (RP) and prostate biopsy. Kaplan-Meier and Cox proportional hazards regression were used to examine the associations between GC and the study outcomes adjusting for baseline clinical risk factors. RESULTS: We identified 92,976 patients who underwent Decipher testing that were successfully linked to RWD, including 53,871 from biopsy and 39,105 from RP. The median age at biopsy was 68 years (interquartile range, IQR 62-73) and 27.3%, 27.6%, 29.8%, 10.8% and 4.5% were low, favorable-intermediate, unfavorable-intermediate, high-risk and unclassified by NCCN groupings. The GC classified 51.3%, 18.2% and 30.4% as low, intermediate and high risk, respectively. Figure 1 illustrates the distribution of GC scores across Gleason grade group among the entire cohort. Among RP tested patients, the median age was 65 years (IQR 60-69). In this subset, the GC classified 38.6%, 16.9% and 44.4% as low, intermediate and high risk. Among biopsy-tested patients the GC was independently associated with risk of metastasis (hazard ratio, HR 1.22 per 0.1 unit increase in GC, 95% CI 1.19-1.26, p<0.001) in models adjusted for age and NCCN risk group. Among RP-treated patients the GC was associated with risk of BCR (HR 1.14 per 0.1 unit increase, 95% CI 1.12-1.17, p<0.001) and metastasis (HR 1.18 per 0.1 unit increase, 95% CI 1.15-1.21, p<0.001) in models adjusting for age and CAPRA-S. CONCLUSIONS: In this real-world study conducted at the national scale, Decipher GC was independently associated with the risk of BCR and metastasis among patients managed in contemporary practice. Source of Funding: Veracyte Inc © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e212 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Michael Leapman More articles by this author Julian Ho More articles by this author Yang Liu More articles by this author Xin Zhao More articles by this author Alexander Hakansson More articles by this author James Proudfoot More articles by this author Elai Davicioni More articles by this author Darryl Martin More articles by this author Yi An More articles by this author Tyler Seibert More articles by this author Daniel Spratt More articles by this author Matthew Cooperberg More articles by this author Preston Sprenkle More articles by this author Ashley Ross More articles by this author Expand All Advertisement PDF downloadLoading ...

발달장애 학생의 성인기 전환에 필요한 지원 요소 탐색

The purpose of the this study is to explore the special education teachers’ perception of the support elements for transition from school to adulthood of students with developmental disabilities. Accordingly, the concept mapping method, effective in establishing the conceptual framework of a group for a particular topic, is used to confirm the dimensions, clusters, and importance of support elements for the transition form school to adulthood of students with developmental disabilities. In this study, 15 special education teachers participated in interviews to derive ideas for the topic, and finally 61 statements were confirmed. In order to examine the special education teacher’s perception of the statement, similarity classification and importance rating task were performed on 20 special education teachers. As a result of the multi-dimensional scale analysis, two dimensions were found to be appropriate, the first dimension was ‘learner-centered - provided-centered’ and the second dimension was ‘school-closed - society-connected’. In addition, as a result of the cluster analysis, four clusters and seven sub-clusters have been drawn, and each cluster was ‘implementation of the curriculum for the transition considering longitudinal linkage‘, ‘competency reinforcement of school-centered support system’, ‘establishment of social support system’, ‘practical education that strengthens students’ competency’. Lastly, the importance of the statement related to the actual educational support was found to be high. Based on the result, the implication of the support elements necessary for the transition to adulthood of students with developmental disabilities recognized by special teachers and the limitations of this study were discussed.

How does the local area deprivation influence life chances for children in poverty in Wales: A record linkage cohort study

ObjectivesChildren growing up in poverty are less likely to achieve in school and more likely to experience mental health problems. This study examined factors in the local area that can help a child overcome the negative impact of poverty. DesignA longitudinal record linkage retrospective cohort study. ParticipantsThis study included 159,131 children who lived in Wales and completed their age 16 exams (Key Stage 4 (KS4)) between 2009 and 2016. Free School Meal (FSM) provision was used as an indicator of household-level deprivation. Area-level deprivation was measured using the Welsh Index of Multiple Deprivation (WIMD) 2011. An encrypted unique Anonymous Linking Field was used to link the children with their health- and educational records. Outcome measuresThe outcome variable ‘Profile to Leave Poverty’ (PLP) was constructed based on successful completion of age 16 exams, no mental health condition, no substance and alcohol misuse records in routine data. Logistic regression with stepwise model selection was used to investigate the association between local area deprivation and the outcome variable. Results22% of children on FSM achieved PLP compared to 54.9% of non-FSM children. FSM Children from least deprived areas were significantly more likely to achieve PLP (adjusted odds ratio (aOR) - 2.20 (1.93, 2.51)) than FSM children from most deprived areas. FSM children, living in areas with higher community safety, higher relative income, higher access to services, were more likely to achieve PLP than their peers. ConclusionThe findings indicate that community-level improvements such as increasing safety, connectivity and employment might help in child's education attainment, mental health and reduce risk taking behaviours.

Relationships between parental mental illness and/or offending and offspring contact with the police in childhood: Findings from a longitudinal record-linkage study.

Parental offending and mental illness are associated with an increased risk of criminal behaviour in offspring during adolescence and adulthood, but the impact of such problems on younger children, including children's experiences of victimisation, is less well known. To investigate the associations between parental offending and mental illness recorded prior to their offspring's age of 5years and their offspring's contact with police as a 'person of interest', 'victim' or 'witness' between ages 5 and 13years. Our sample consisted of 72,771 children and their parents drawn from the New South Wales Child Development Study, an Australian longitudinal population-based record linkage study. Logistic regression analyses were conducted to examine associations between parental factors and offspring's police contact. Separate models examined the relationships between maternal or paternal offending and mental illness, as well as the combination among either or both parents, as the independent variables, and their child's police contact as the dependent variable. Parental offending and mental illness were each individually associated with indices of police contact among offspring. Stronger associations were observed when both offending and mental illness were present together (in either parent, or when one parent had both exposures). Stronger associations were evident for mothers with both factors across all offspring police contact types, relative to fathers with both factors, in fully adjusted models; that is, children of mothers with both factors were over four times as likely to have contact with police as a 'person of interest' (OR=4.29; 95% CI=3.75-4.92) and over three times as likely to have contact as a victim (OR=3.35; 95% CI=3.01-3.74) or witness (OR=3.58; 95% CI=3.03-4.24), than children whose mothers had no history of offending or mental illness. Children with a parental history of offending and mental illness in early life are at an increased likelihood of early police contact as young as 5-13years of age; it is vital that this is taken as a signal to help them and their affected families according to need.

Lipoprotein(a) in progressive coronary artery disease: beyond classical cardiovascular risk parameters

Abstract Introduction Classical primary preventive cardiovascular disease (CVD) risk algorithms, such as the Framingham risk score and the widely used QRISK score in the UK, predate large-scale deep-phenotyped biomedical research resources. There is therefore the opportunity to identify novel predictors. In addition, whilst CVD risk profiling is well studied in the context of primary prevention, there is a paucity of data examining risk in regard to secondary prevention. Purpose To identify independent predictors of repeat coronary artery revascularisation, following index coronary angioplasty. Methods The UK Biobank is a large prospective multicentre study which recruited over 500,000 participants in the UK aged 37–73 years at entry between 2006–2010. Data are derived from an array of physical measurements, self-reported measures and biological samples, together with longitudinal linkage to hospital inpatient records and death registries. Procedural codes were used to identify patients who had undergone first coronary angioplasty from 2006 onwards. Repeat revascularisation (RR) was defined as angioplasty or bypass grafting occurring at least 9 months after the index angioplasty, in order to preclude instances of staged revascularisation and in-stent restenosis. Data were censored at January 2021 or date of death as appropriate. Results A total of 12,853 participants underwent a first coronary angioplasty during the study period, with 1,394 (10.8%) requiring RR over a median follow-up of 6.5 years. The average age was 64 years in the RR cohort and 1117 (80%) were male. Univariate analyses confirmed a number of established associations with RR, including for example diabetes mellitus and hypertension. Median lipoprotein(a) concentrations were 27.6 vs. 30.3nmol/L in the RR group, p=0.066. Cox regression analyses (n=7,216) incorporating 21 biometric and clinical parameters demonstrated that lipoprotein(a) &amp;gt;80nmol/L was one of six independent predictors of time to RR (HR 1.24, p=0.006), independent of other lipids. The strength and significance of this association persisted when the number of covariates was reduced to include only other lipids and classical cardiovascular risk parameters. LDL, HDL, and triglyceride levels were not significant predictors in this model. Conclusions Lipoprotein(a) is identified as a major independent driver of RR. However current European Society of Cardiology guidance does not recommend measurement of Lipoprotein(a) in the context of progressive coronary artery disease. Furthermore, it is known that strategies such as lifestyle advice and statins – recommended in all patients with established coronary artery disease - do no reduce lipoprotein(a), whilst niacin and PCSK9 inhibitors do have a significant effect. Indications for lipoprotein(a) measurement must therefore be broadened, so that specific treatments to lower it can be instituted in order to reduce the burden of progressive coronary artery disease. Funding Acknowledgement Type of funding sources: Private grant(s) and/or Sponsorship. Main funding source(s): Herefordshire Heart Fund

Health service use of infants involved in family justice care and supervision proceedings in Wales: a longitudinal national data linkage study.

ObjectiveWhen an infant is identified as having suffered or is at risk of suffering significant harm from parents or caregivers, section 31 care and supervision proceedings (s.31, Children Act 1989) may be issued. We examined the healthcare use of infants under one year old subject to these proceedings in Wales. ApproachA retrospective e-cohort study utilising data held in the Secure Anonymised Information Linkage (SAIL) Databank. General Practice records, emergency department attendances, and hospital admissions (non-elective and elective) were linked with family justice (Cafcass Cymru) data between 2011–2020 for all s.31 proceedings (n = 920). By comparing to the infant population not undergoing family law proceedings (n = 18179), regression models examined the incidence and rate of healthcare events between birth and the court proceeding application date. Wider determinants of health were sequentially added (infant perinatal factors, maternal mental health, sex, area-level deprivation). Reasons for healthcare events were also investigated. ResultsThese models showed that infants who were subject to s.31 care and supervision proceedings were more likely to have required healthcare prior to proceedings than the comparison group. A similar pattern was shown for the rate of healthcare events. Even when wider determinants of health were included in the models, this difference was especially pronounced for incidence and event rate ratios for emergency department attendances, [incidence RR = 1.73, CI = 1.52–1.96; event RR = 2.08, CI = 1.82–2.38] and non-elective inpatient admissions [incidence RR = 2.91, CI = 2.57–3.28; event RR = 3.84, CI = 3.31–4.45]. Infants in s.31 proceedings were more likely to require healthcare for injury and poisoning, and other external causes. ConclusionThis is the first population-wide evidence on the health of infants subject to s.31 care and supervision proceedings in Wales. These findings highlight the increased healthcare utilisation for this population. The study helps to build a better understanding of the needs and vulnerabilities of infants in the family justice system.

Longitudinal study of diabetes prevalence and hospitalisations among care experienced and general population children in Scotland: evidence of an end of care “cliff edge”?

ObjectivesCare experienced people have poorer health in UK and internationally, but the direction of causation is debated. Using longitudinal cross-sectoral data linkage we explore if inequalities in diabetes prevalence and hospitalisation are present before entering care or develop during or after leaving care. ApproachHealth and social care data were linked for 13,830 care experienced children (CEC) and together with 649,771 general population children (GPC) their prescriptions and hospitalisations were followed from birth between 1990-2004 to study end in 2016. Diabetes prevalence was estimated as at least one prescription or inpatient hospitalisation for diabetes. We compared hospitalisation percentages and rates in the two cohorts by age and gender. Results from multivariable models adjusted for socioeconomic status, age, gender, care type/length, local authority, and comorbidities will be presented at conference. ResultsDiabetes prevalence was similar in both cohorts and higher in females. However, CEC had twice as many hospitalisations as GPC. Mean hospitalisations were highest among care experienced males (6 compared to 3.6 in females and 2 in GPC). 24% of CEC were hospitalised 3-9 times and 13% 10+ times, for GPC these were 19% and 3% respectively. Hospitalisation rates increase with age in both cohorts, as do differences between cohorts. At ages 0-4 hospitalisation rates are similar, by ages 12-15 CEC have twice as high and at ages 18-27 4-times higher hospitalisation rates. Among CEC, across all ages hospitalisation rates are lower while the child is in care, with the lowest rates in foster care. Hospitalisation rates are highest before entering and after leaving care. ConclusionResults for diabetes hospitalisations suggest that being in care can be good for children’s health. However, a sudden withdrawal of support can create a “cliff edge” and health may deteriorate after leaving care. Data linkage has significant potential to inform policy and practice, including supporting CEC after leaving care.

How public and participant voices have influenced the UK Longitudinal Linkage Collaboration and its Trusted Research Environment.

ObjectivesUK longitudinal population studies have complex governance structures and participant safeguards. As a new Trusted Research Environment (TRE) for &gt;20 longitudinal studies, the UK Longitudinal Linkage Collaboration (UK LLC) must ensure effective public/participant input to make central design and operational decisions whilst retaining participant trust and acceptability. ApproachThe UK LLC’s governance model is based on the principle that participant trust lies with their study; not supporting infrastructure providers. Therefore, the UK LLC takes responsibility for system governance and data sharing agreements whilst studies retain control over participant data and its uses. Our public/participant model reflects this. We have established centralised groups to advise on data access applications and on UK LLC communications. Simultaneously we work with study managers to gain insight from their involvement work and also commission UK LLC specific activities. Including participants as well as the public helps elicit a range of input and views. ResultsWe have integrated public/participant input across the UK LLC by recruiting: a public panel to review applications; an advisory panel to contribute to our methodological development; and public/participant advisors to sit on the UK LLC Strategic Advisory Committee. We also work with studies’ involvement managers to draw insights from, and coordinate new, study-level involvement. This has informed the development of data application frameworks and brings a public viewpoint to decisions regarding linkage of functionally anonymous participant NHS records for research. The involvement of study participant groups has shaped the design of data flows into the TRE (e.g., where some studies do not permit the flow of address data for geospatial research) and has helped set a ‘social contract’ regarding acceptable UK LLC data use. ConclusionWorking with public/participant representatives directly, and in partnership with study managers, we have developed safeguards and integrated a public/participant voice into key UK LLC activities. Our ongoing aim is to develop a sustainable new-way-of-working for record linkage in longitudinal research which is acceptable to participants and the public.

The UK Longitudinal Linkage Collaboration legal &amp; governance framework: managing ‘delegated and distributed’ data processing working with cross-sectorial data owners.

ObjectivesThe UK Longitudinal Linkage Collaboration (UKLLC) was established to link and integrate data from many longitudinal population studies (LPS) with participants’ records from diverse governmental data owners across the UK. The UKLLC aims to unify disparate requirements from many data owners in different legal jurisdictions into one, predictable, access framework.&#x0D; ApproachThe UKLLC framework provides a legal and governance ‘funnel’ which enables diverse data owner requirements to be captured; for UKLLC to centrally control these; and - from a research applicants perspective - there to be a predictable single process that is bound into emerging national standards for data science (e.g., the ‘Five Safes’ framework). This is applied through a Trusted Research Environment (TRE) approach where ISO27001 and Digital Economy Act accredited contracts, data sharing agreements, policies and procedures define and permit data flows and provide organisational separation of key functions including the third-party processing of participant identifiers for linkages.&#x0D; ResultsWe developed a project review mechanism enabling UKLLC to efficiently process applications whilst respecting core data owners requirements: each aspect of this is tailored to relevant legal, jurisdictional and accreditation requirements. Contracting specialist processors enabled UKLLC to implement ‘organisational separation’ between use of participant identifiers and de-personalised data, enabling a ‘functionally anonymous’ approach facilitating efficient onward sharing of integrating data.&#x0D; The processes we have developed promote transparency and trust with regulators, participants and public. UKLLC host (University of Bristol) is able to be the data controller of data within the UKLLC; make application decisions; create the Licenced Dataset; and, curate and reuse data and metadata products of the research whilst data is maintained functionally anonymous. Large-scale complex linked data-sets are provisioned in a timely manner.&#x0D; ConclusionThe UKLLC is part of a large ecosystem of organisations. A delegated and distributed model has been established supported by our contracts and policy. This configuration has allowed the delivery of cross-cutting data-sets to address priority Covid-19 research questions and a generalisable and sustainable model for the future

The UK Longitudinal Linkage Collaboration: a trusted research environment for the longitudinal research community.

ObjectivesThe COVID-19 Longitudinal Health and Wellbeing National Core Study utilises data from Longitudinal Population Studies (LPS) and whole-population NHS databases: yet no resource existed linking multiple LPS to COVID-19 records. A centralised infrastructure was needed to pool LPS data and systematically link participants’ routine health, administrative and environmental records.&#x0D; ApproachThe UK Longitudinal Linkage Collaboration (UK LLC) is an unprecedented infrastructure integrating data from major inter-disciplinary and pan-UK LPS and systematically linking these to participants’ COVID-19 relevant records. Integrated and curated data are made available for pooled analysis within a functionally anonymous Trusted Research Environment (TRE). We commissioned a “Secure eResearch Platform - SeRP” to provide an underlying secure computing system including trusted third-party processing of participant identifiers. We developed a bespoke governance and data curation framework designed collaboratively with LPS data managers and with an access mechanism enabling LPS to retain key decision-making controls. Public/participant involvement guided our approach.&#x0D; ResultsData from &gt;20 LPS and &gt;250,000 Participants' are linked to NHS records (primary, secondary, community care; COVID-19; civic registers; prescriptions; mental health) and geo-coded environmental exposures (pollution, green space, neighbourhood indicators). UKLLC is now accessible to UK-wide researchers for COVID-19 research. Our pipeline/resource/provision of linked data is based on three key innovations: (1) a “Linkage brokerage” model where our trusted third-party processes participant identifiers for many different data owners; (2) a novel longitudinal data pipeline with NHS records which enables linkage and data extraction and update of records over time; (3) a “Delegated &amp; Distributed Access Framework” enabling UK LLC Data Access Panel to consider applications on behalf of data owners (e.g., the NHS) whilst distributing applications to LPS for approval of appropriate data use.&#x0D; ConclusionUK LLC provides a strategic research-ready platform for longitudinal research: a clear step change from pre-pandemic capability. With sustained investment, and through exploring options to extend linkages and generalise to wider purposes, UK LLC is positioned to inform cross-cutting themes such as understanding health and social inequalities, health-social-environmental interactions, and managing the COVID-19 recovery.

The challenges of developing an application process for a new linked data resource.

ObjectivesDeveloping a rigorous application process for COVID-19 linked data within the UK Longitudinal Linkage Collaboration’s Trusted Research Environment (TRE) included balancing the requirements of 20+ longitudinal studies and several data providers with the need to provision data to researchers in a safe and efficient manner. ApproachThe UK LLC is an innovative project, developing a new approach to linking &gt;20 well-established longitudinal studies to routine health and administrative records. Setting up the process included consultation with stakeholders and other multifaceted data resources in order to implement the best practices available. We also had to acknowledge constraints imposed by a variety of data controllers and ensure meaningful public contribution. The initial process had to be flexible while we assessed the first applications, and because the TRE was regularly being updated with new data. This required an adaptive approach where the process was created, adopted, and re-evaluated in real-time. ResultsThe UK LLC has a three-stage application and review process, starting with an enquiry through the HDRUK Innovation Gateway. Enquiries are triaged to ensure the applications meet basic requirements (UK-based, COVID-19 related, scientifically sound, and feasible) before the applicants are invited to submit a full application. The full application is then reviewed internally against the Five Safes model, in communication with applicants. Approved applications move on to the third stage which includes a review by Data Access Committees (DACs) for each study whose data is requested, and the UK LLC DAC - comprised of a public review panel advising on lay summaries and public involvement in the proposed project, and, if applicable, an additional linked data review panel on behalf of NHS Digital. ConclusionOur process is still evolving as new datasets are added and in response to feedback. However, the team has risen to the challenge of balancing this with the needs of 20+ studies, stakeholders, applicants, and participant/public contributors, to create an agile process that can handle complex needs and requirements.

UK Longitudinal Linkage Collaboration – and the challenges in creating a new Longitudinal Populations Studies linked data resource.

ObjectivesThe UK Longitudinal Linkage Collaboration (UK LLC) is a new, unprecedented infrastructure enabling research into the COVID-19 pandemic. The UK LLC integrates data from &gt;20 UK longitudinal studies with systematically linked health, administrative and environmental records to facilitate cross-disciplinary COVID-19 research for accredited UK based researchers. ApproachBringing together all of the key components that form the UK LLC was a huge challenge that may have only been possible in the midst of the pandemic. First, we collaborated with the Longitudinal Population Studies (LPS) to create and agree how data linkage, data provision and applications to access the UK LLC would work. In parallel, public contributors helped to create fair processing materials. Finally, we worked closely with NHS Digital and other key national data providers to organise approvals for all studies to be linked, and for the UK LLC to have delegated decision-making for research applications. ResultsWe faced a myriad of challenges creating the UK LLC including: Short timeframe and short-term funding structure – initial funding for six months with an 18-month extension. Working across &gt;20 different LPS and four nations with different structures for access, consent and data provision. Lack of capacity at various points in the data pipeline due to the volume of COVID-19 research required and underway across the involved organisations. Data processing complexities – split data method means no one can see the entire process therefore catching linkage errors requires working across four different organisations. With such complex data flows it is challenging to find the balance with communications about data to the public – being accurate about what we are doing, but expressing the complexity in lay terms. ConclusionCreating the UK LLC required collaboration with LPS, data providers and researchers. An iterative approach to creating the data application and data provision pipelines was crucial in developing these processes. The UK LLC was built quickly, from initial funding in October 2020 to provisioning data to researchers in December 2021.

The association between early childhood onset epilepsy and attention-deficit hyperactivity disorder (ADHD) in 3237 children and adolescents with Autism Spectrum Disorder (ASD): a historical longitudinal cohort data linkage study.

Children and young people with Autism Spectrum Disorder (ASD) have an increased risk of comorbidities, such as epilepsy and Attention-Deficit/Hyperactivity Disorder (ADHD). However, little is known about the relationship between early childhood epilepsy (below age 7) and later ADHD diagnosis (at age 7 or above) in ASD. In this historical cohort study, we examined this relationship using an innovative data source, which included linked data from routinely collected acute hospital paediatric records and childhood community and inpatient psychiatric records. In a large sample of children and young people with ASD (N = 3237), we conducted a longitudinal analysis to examine early childhood epilepsy as a risk factor for ADHD diagnosis while adjusting for potential confounders, including socio-demographic characteristics, intellectual disability, family history of epilepsy and associated physical conditions. We found that ASD children and young people diagnosed with early childhood epilepsy had nearly a twofold increase in risk of developing ADHD later in life, an association which persisted after adjusting for potential confounders (adjusted OR = 1.72, CI95% = 1.13-2.62). This study suggests that sensitive monitoring of ADHD symptoms in children with ASD who have a history of childhood epilepsy may be important to promote early detection and treatment. It also highlights how linked electronic health records can be used to examine potential risk factors over time for multimorbidity in neurodevelopmental conditions.

Response to lithium and anticonvulsants among patients with bipolar disorder with and without comorbid epilepsy – A nation-wide population-based longitudinal study

ObjectiveIn a nation-wide population-based longitudinal register linkage study for the first time 1) to investigate long-term response to lithium in patients with bipolar disorder with and without comorbid epilepsy, and 2) within patients with bipolar disorder and comorbid epilepsy to compare differences in responses between lithium, valproate and lamotrigine. MethodsWe used Danish nation-wide population-based longitudinal register linkage to identify 154 patients with bipolar disorder and comorbid epilepsy and 8381 patients with bipolar disorder without comorbid epilepsy during a study period from 1995 to 2017. Response was defined as continuous monotherapy with lithium, valproate or lamotrigine without switch to or add-on of an antipsychotic drug or an antidepressant or hospitalization during an up to ten-year follow-up period. We calculated standardized absolute risks and differences thereof with respect to age, gender, socioeconomic status and comorbidity with other physical disorders than epilepsy. ResultsResponse to lithium was decreased in patients with bipolar disorder with versus without comorbid epilepsy during the ten-year follow-up period and the difference remained after standardization for comorbidity with other physical disorders than epilepsy. Within patients with bipolar disorder and comorbid epilepsy, response to lithium was decreased compared with responses to valproate and lamotrigine. ConclusionsThe findings suggest that valproate and lamotrigine should be given priority in patients with comorbid bipolar disorder and epilepsy. The study highlights the need for closely clinical monitoring and psychological support for patients with bipolar disorder and comorbid epilepsy and emphasize the need for further long-term studies of effect of interventions.

AlzEye: longitudinal record-level linkage of ophthalmic imaging and hospital admissions of 353 157 patients in London, UK

PurposeRetinal signatures of systemic disease (‘oculomics’) are increasingly being revealed through a combination of high-resolution ophthalmic imaging and sophisticated modelling strategies. Progress is currently limited not mainly by technical issues,...

Anxiety and depression among children and young people involved in family justice court proceedings: longitudinal national data linkage study.

Little is known about mental health problems of children and young people (CYP) involved with public and private law family court proceedings, and how these CYP fare compared to those not involved in these significant disruptions to family life. This study examined records of depression/anxiety in CYP involved in public and private law proceedings using linked population-level data across Wales. Retrospective e-cohort study. We calculated the incidence of primary-care-recorded depression/anxiety among CYP involved in these proceedings and in a comparison group, using Poisson regression. Depression/anxiety outcomes following proceedings were evaluated using pairwise Cox regression, with age- and gender-matched controls of CYP who had no involvement with the courts. CYP in the public group had twice the risk of depression (adjusted incidence rate ratio aIRR = 2.2; 95% CI 1.9-2.6) and 20% higher risk of anxiety (aIRR = 1.2; 95% CI 1.0-1.5) relative to the comparison group. The private group had 60% higher risk of depression (aIRR = 1.6; 95% CI 1.4-1.7) and 30% higher risk of anxiety (aIRR = 1.3; 95% CI 1.2-1.4). Following private law proceedings, CYP were more likely to have depression (hazard ratio HR = 1.9; 95% CI 1.7-2.1), and anxiety (HR = 1.4; 95% CI 1.2-1.6) than the control group. Following public proceedings, CYP were more likely to have depression (HR = 2.1; 95% CI 1.7-2.5). Incidence of anxiety or depression following court proceedings was around 4%. Findings highlight the vulnerability of CYP involved in family court proceedings and increased risk of depression and anxiety. Schools, health professionals, social and family support workers have a role to play in identifying needs and ensuring CYP receive appropriate support before, during and after proceedings.

A baseline profile of the Queensland Cardiac Record Linkage Cohort (QCard) study

BackgroundCardiovascular disease (CVD) is one of the leading causes of death in Australia. Longitudinal record linkage studies have the potency to influence clinical decision making to improve cardiac health. This paper describes the baseline characteristics of the Queensland Cardiac Record Linkage Cohort study (QCard).MethodsInternational Classification of Disease, 10th Revision Australian Modification (ICD-10-AM) diagnosis codes were used to identify CVD and comorbidities. Cost and adverse health outcomes (e.g., comorbidities, hospital-acquired complications) were compared between first-time and recurrent admissions. Descriptive statistics and standard tests were used to analyse the baseline data.ResultsThere were 132,343 patients with hospitalisations in 2010, of which 47% were recurrent admissions, and 53% were males. There were systematic differences between characteristics of recurrent and first-time hospitalisations. Patients with recurrent episodes were nine years older (70 vs. 61; p < 0.001) and experienced a twice higher risk of multiple comorbidities (3.17 vs. 1.59; p < 0.001). CVD index hospitalisations were concentrated in large metropolitan hospitals.ConclusionsOur study demonstrates that linked administrative health data provide an effective tool to investigate factors determining the progress of heart disease. Our main finding suggests that recurrent admissions were associated with higher hospital costs and a higher risk of having adverse outcomes.

A longitudinal linkage study of occupation and ischaemic heart disease in the general and Māori populations of New Zealand.

ObjectivesOccupation is a poorly characterised risk factor for cardiovascular disease (CVD) with females and indigenous populations under-represented in most research. This study assessed associations between occupation and ischaemic heart disease (IHD) in males and females of the general and Māori (indigenous people of NZ) populations of New Zealand (NZ).MethodsTwo surveys of the NZ adult population (NZ Workforce Survey (NZWS); 2004–2006; n = 3003) and of the Māori population (NZWS Māori; 2009–2010; n = 2107) with detailed occupational histories were linked with routinely collected health data and followed-up until December 2018. Cox regression was used to calculate hazard ratios (HR) for IHD and “ever-worked” in any of the nine major occupational groups or 17 industries. Analyses were controlled for age, deprivation and smoking, and stratified by sex and survey.Results‘Plant/machine operators and assemblers’ and ‘elementary occupations’ were positively associated with IHD in female Māori (HR 2.2, 95%CI 1.2–4.1 and HR 2.0, 1.1–3.8, respectively) and among NZWS males who had been employed as ‘plant/machine operators and assemblers’ for 10+ years (HR 1.7, 1.2–2.8). Working in the ‘manufacturing’ industry was also associated with IHD in NZWS females (HR 1.9, 1.1–3.7), whilst inverse associations were observed for ‘technicians and associate professionals’ (HR 0.5, 0.3–0.8) in NZWS males. For ‘clerks’, a positive association was found for NZWS males (HR 1.8, 1.2–2.7), whilst an inverse association was observed for Māori females (HR 0.4, 0.2–0.8).ConclusionAssociations with IHD differed significantly across occupational groups and were not consistent across males and females or for Māori and the general population, even within the same occupational groups, suggesting that current knowledge regarding the association between occupation and IHD may not be generalisable across different population groups.

Vínculo longitudinal da Estratégia Saúde da Família na linha de frente da pandemia da Covid-19

ABSTRACT This paper analyzes the Family Health Strategy (ESF) work process in the Covid-19 pan- demic per the PHC longitudinal linkage attribute. This cross-sectional, descriptive, and analytical study collected primary data from a national electronic survey carried out from September to December 2020. Ceará and Paraíba, States of the Northeastern region with more than 84% ESF coverage, were included in this excerpt. The participation of female workers (962) prevailed, with Community Health Workers (ACS, 29%) and nurses (26.61%), women (81.19%), 18-39 years of age (61.85%), statutory public servants (48,75%), active in urban territories (58.63%). Approximately 92.54% of the participants worked in the period, with only 4.70% working remotely. A total of 51.53% stated that they were ‘carrying out routine activities, as before’, and 31.42% revealed they were ‘prioritizing activities related to Covid-19’. New SUS Card registrations were made according to 67.94% of the participants. The research confirms that the ESF is a very frequent gateway, if not the main one, for Covid-19 cases and that its effectiveness for the care of the registered users is weakened although it meets the dimensions of its attribute.

Response to antidepressants among patients with unipolar depression with and without comorbid epilepsy-a nation-wide population-based longitudinal study

ObjectiveIn a nation-wide population-based longitudinal register linkage study to investigate long-term response to antidepressants in patients with depression with and without comorbid epilepsy. MethodsWe used Danish nation-wide population-based longitudinal register linkage to identify 1487 patients with depression and comorbid epilepsy and 71,163 patients with depression without comorbid epilepsy during a study period from 1995 to 2017. Response was defined as continuous monotherapy with an antidepressant drug without switch to or add-on of another antidepressant drug, an antipsychotic drug or lithium or hospitalization during an up to ten-year follow-up period. We calculated standardized absolute risks and differences thereof with respect to age, gender, socioeconomic status and comorbidity with other physical disorders than epilepsy. ResultsIn patients with depression, response to antidepressants was decreased with versus without comorbid epilepsy during the ten-year follow-up period. One year after start of antidepressant treatment the proportion of responders was 12% (CI: 10%-14%) lower in patients with versus without comorbid epilepsy in the standardized population. Response to antidepressants were specifically decreased among younger and unemployed patients with depression and comorbid epilepsy. LimitationsWe did not include sub-analyses according to subtypes of epilepsy. ConclusionsResponse to antidepressants was decreased in patients with comorbid epilepsy versus without comorbid epilepsy at all time points during a ten-year follow-up period. The study highlights the need for closely clinical monitoring and psychological support for patients with depression and comorbid epilepsy and emphasize the need for further long-term studies of effect of interventions.