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Articles published on Record Linkage Study

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  • Research Article
  • 10.1093/aje/kwag028
An adaptive method of emergency department syndromic surveillance to nowcast the frequency of presentations that will have a severe 28-day outcome following influenza or COVID-19 infection: a retrospective analytical record linkage study.
  • Feb 6, 2026
  • American journal of epidemiology
  • David J Muscatello + 9 more

During epidemics, emergency department (ED) syndromic surveillance of patient arrivals provides timely but non-virus-specific assessment of epidemic intensity. Surveillance of severe infection outcomes (intensive care admission or death) is less timely because outcomes can take weeks to occur. Time series models can be used to estimate the frequency of severe infection outcomes due to viruses. We developed and evaluated daily time series modelling applied to linked ED, infection and outcomes data from Australia to better predict population and health system burden during acute respiratory virus epidemics. In retrospective daily surveillance emulation, generalised additive models nowcasted (short-term forecast) the frequency of ED arrivals attributable to each of influenza and COVID-19 that will have a severe infection outcome within 28 days. Daily nowcasts spanned days -29 to -4 from each date for which surveillance was emulated. To validate the method, nowcasts were compared with subsequently observed severe infection outcome frequencies for December 2021 through February 2023. During this period, the mean daily day -4 nowcast error was 2.7 (34.2%), compared with 3.5 (43.8%) if outcomes known at day -1 were used. With increasing real-world data availability, this method could improve rapid, automated epidemic assessment for timely public health action.

  • Research Article
  • 10.1016/j.anzjph.2025.100305
Agreement between self-report of coronary heart disease by participants in the 45 and Up Study and hospital administration data: A record linkage study.
  • Feb 1, 2026
  • Australian and New Zealand journal of public health
  • Nicole Freene + 4 more

Agreement between self-report of coronary heart disease by participants in the 45 and Up Study and hospital administration data: A record linkage study.

  • Research Article
  • 10.1016/j.jstrokecerebrovasdis.2025.108478
Lower socio-economic status is associated with first-ever stroke incidence: An Australian state-wide record linkage study.
  • Dec 1, 2025
  • Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association
  • Tan V Bui + 8 more

Lower socio-economic status is associated with first-ever stroke incidence: An Australian state-wide record linkage study.

  • Research Article
  • 10.1370/afm.240569
Continuity of Primary Care and Preventable Hospitalization for Acute Conditions: A Machine Learning-Based Record Linkage Study.
  • Nov 1, 2025
  • Annals of family medicine
  • Ngoc Mai Phuong Nguyen + 4 more

Reducing potentially preventable hospitalization (PPH), also known as ambulatory care-senstive conditions, is a global concern. This study linked data from Sax Institute's 45 and Up Study on individuals aged 45 years and older from New South Wales, Australia, with Australian Medicare claims data to establish a causal relationship between continuity of care and acute PPH using a double machine learning model. We utilized 11 years of linked data (2007-2017) to analyze the impact of continuity of care on acute PPH, controlling for key patient characteristics (ie, age, multimorbidity status, cultural diversity, sex, education level, psychological status, physical limitation, smoking status, socioeconomic deciles). Estimation was done using a double machine learning technique with 4 algorithms (ie, least absolute shrinkage and selection operator, random forest, extreme gradient boosting, artificial neural network) to ensure robustness. Among 54,376 participants, 27,634 individuals (50.8%) experienced at least 1 acute PPH episode during the 11-year study period. Our findings indicate that even a slight improvement in continuity of care can reduce the incidence of acute PPH compared with non-acute PPH. For example, the reduction in the probability of acute PPH compared with non-acute PPH ranges from 9.8% (95% CI, 1.1%-17.8%) to 23.5% (95% CI, 14.1%-32.4%) across 4 models when continuity of care increases from the 45th percentile (0.274) to the 50th percentile (0.301). Continuity of care at the primary level plays a key role in reducing acute PPH. Policies focused on person-centered or integrated care should include initiatives to promote continuity of care and support general practitioners in improving continuity of care.The authors of this article have provided Hindi and Vietnamese translations of the abstract.

  • Research Article
  • 10.1097/corr.0000000000003654
Is Malignancy Associated With Arthroplasty? A Meta-analysis.
  • Nov 1, 2025
  • Clinical orthopaedics and related research
  • Thomas Johnstone + 7 more

Although implants have been linked to malignancies in other medical contexts, such as the relationship between anaplastic large cell lymphoma and breast implants, the potential association between orthopaedic implants and cancer remains unclear. Several studies have investigated this question, but findings have been inconsistent. A comprehensive meta-analysis is needed to clarify whether total joint arthroplasty increases the risk of malignancy. (1) Is receiving a THA or TKA associated with an increased risk of cancer? (2) Are certain implant types (such as metal-on-metal or cemented) associated with increased cancer risk? (3) Is follow-up duration associated with changes in observed cancer risk estimates? A systematic review and meta-analysis were conducted using PubMed, Embase, and SCOPUS to identify studies assessing cancer incidence rates in patients who received hip or knee arthroplasty compared to patients in control groups who did not receive arthroplasty. Databases were queried from inception through the final search date (November 23, 2024). Eligible studies reported or allowed derivation of an effect estimate comparing overall cancer incidence rates in recipients of THA or TKA with an external reference population. From 1838 screened articles, 16 studies were included, all of which provided extractable effect estimates that were entered into one or more of our meta-analyses. Included studies consisted primarily of record-linkage studies connecting national, longitudinally maintained arthroplasty registers to similarly longitudinal national mortality and cancer registers. Study quality was assessed using the Newcastle-Ottawa Scale, which awards up to nine points across three categories, with higher scores indicating lower risk of bias. The 16 included studies scored between 6 and 8 (mean ± SD 7.1 ± 0.8), reflecting generally high methodological quality. The primary analysis included data from 977,465 patients of both sexes and all age groups who underwent hip or knee arthroplasty and were followed up for over 7,415,134 person-years. Effect estimates were pooled with a random-effects model because heterogeneity was present (between-study σ 2 = 0.016 versus within-study σ 2 = 0.002; Q = 1195, p < 0.001), and a funnel plot showed no evidence of publication bias. To explore associations between implant type and cancer risk for patients undergoing THA, we conducted separate meta-analyses for studies reporting on metal-on-metal bearing surfaces and those reporting on cemented fixation. To assess latency effects, we compared cancer incidence rates in patients with more or less than 10 years of follow-up and conducted a meta-regression to evaluate the association between follow-up duration and cancer risk. We did not perform an a priori power analysis. Patients who underwent THA or TKA did not have an increased risk of cancer compared with the general population (pooled random-effects estimate [REE] = 0.99 [95% confidence interval (CI) 0.92 to 1.07]; p = 0.88). Subgroup analyses showed no increased cancer risk after TKA (pooled REE = 1.02 [95% CI 0.85 to 1.21]; p = 0.83) or THA (pooled REE = 0.99 [95% CI 0.91 to 1.07]; p = 0.73). Cancer risk did not increase among patients undergoing THA who received cemented implants (pooled REE = 1.00 [95% CI 0.87 to 1.15]; p = 0.93) or metal-on-metal implants (pooled REE = 1.02 [95% CI 0.85 to 1.21]; p = 0.86) compared with the general population. Among patients with ≥ 10 years of follow-up, cancer incidence did not differ from the general population (pooled REE = 1.05 [95% CI 0.97 to 1.14]; p = 0.21); similarly, among patients with < 10 years of follow-up, no increased cancer risk was observed (pooled REE = 0.93 [95% CI 0.81 to 1.06]; p = 0.27). Meta-regression showed no association between follow-up duration and cancer risk (β = -0.004 [95% CI -0.024 to 0.015]; p = 0.66). Based on these findings, clinicians can continue to recommend arthroplasty without additional cancer-related concern based on current evidence. However, future studies should ensure longer follow-up, improved global representation in large linkage studies, and detailed patient- and implant-specific data to better characterize potential rare or long-latency malignancies. Level III, therapeutic study.

  • Research Article
  • 10.1186/s40621-025-00609-6
Can place of death at home be used as a proxy for suicide at home? A record linkage study.
  • Sep 30, 2025
  • Injury epidemiology
  • Joh-Jong Huang + 5 more

Accurate information on where suicides occur; especially in domestic settings, is essential for designing prevention programs. In practice, place of death from death certificates is used as a proxy, though its accuracy is unclear. This study assessed the validity of using death certificate data to determine place of suicide, using linked records from the Suicide Surveillance System in Taiwan. We linked mortality data with the Suicide Surveillance System in Kaohsiung City, Taiwan, from 2021 to 2023. Using the place of suicide recorded in the surveillance system as the reference standard, we estimated the proportion of suicide deaths in each place-of-death category (home, hospital, and other) that actually occurred at home. Among 1465 suicide deaths, 965 were successfully linked to the Suicide Surveillance System. The positive predictive value for death at home was high: 99.3% for hanging, 97.8% for charcoal burning, and 100.0% for other poisoning. Many suicides recorded as hospital deaths actually occurred at home, including 79.3% of hanging, 66.7% of charcoal burning, 85.5% of other poisoning, and 71.6% of jumping cases. After adjustment, the estimated proportion of suicides occurring at home was 80.4% for hanging, 68.2% for charcoal burning, 77.9% for other poisoning, 75.0% for jumping from a height, and 60.2% for other methods. Using death certificates alone underestimates suicides at home. Improved data integration is needed to support more accurate surveillance and better-targeted suicide prevention efforts.

  • Research Article
  • 10.1177/00048674251369628
Geographic mapping of adverse childhood experiences and adolescent suicidal ideation/self-harm in New South Wales, Australia
  • Sep 22, 2025
  • The Australian and New Zealand Journal of Psychiatry
  • Oliver J Watkeys + 7 more

Objective:Rates of suicide, suicidal ideation and self-harm are higher in regional and remote areas of Australia. This study aimed to examine the regional co-occurrence of adolescent suicidal ideation/self-harm and adverse childhood experiences, with consideration of area-based indices of socio-economic disadvantage and remoteness and the availability of mental healthcare professionals in New South Wales (NSW).Methods:Participants were 73,883 young people, born between 2002 and 2005, represented in the NSW Child Development Study (NSW-CDS) – a record-linkage study utilising Commonwealth and State government records. Aggregated longitudinal data according to statistical areas of residence were used to geographically map adolescent suicidal ideation/self-harm against prior adverse childhood experiences, socio-economic disadvantage, geographical remoteness and the number of mental healthcare professionals per region.Results:The average number of adverse childhood experiences and the proportion of children residing in areas of socio-economic disadvantage and geographical remoteness were strongly associated with the regional incidence of suicidal ideation/self-harm. Associations between the incidence of suicidal ideation/self-harm and the number of mental healthcare professionals in each region were not significant in adjusted models. Young people growing up in regions outside of Greater Sydney, particularly those in north-west NSW, had the greatest exposure to early adverse childhood experiences, the highest proportion residing in socio-economic disadvantaged and geographically remote areas and the highest incidence of adolescent suicidal ideation/self-harm.Discussion:These findings have policy implications for the geographic allocation of resources to prevent self-harm and suicide in young people. Early-life interventions should be aimed at reducing adverse childhood experiences.

  • Research Article
  • 10.1159/000547950
Mortality in People with Eating Disorders Presenting to the Health System: Australian Population-Based Record Linkage Study
  • Sep 4, 2025
  • Psychotherapy and Psychosomatics
  • Sarah Maguire + 18 more

Introduction: Most previous mortality research in eating disorders (EDs) involves individuals attending specialist treatment services. Data linkage across jurisdictional health databases at a population level improves the generalisability of findings. This study investigates mortality risk and causes of death for people with an ED across a large geographic region using administrative health datasets. Methods: Using linked hospital, mental health, and death records, a retrospective cohort study was conducted including individuals aged 10–59 years who received an ED diagnosis during hospital-based encounters in Australia, over a 10-year period between 2010 and 2019. A contemporary cohort of people accessing community care only was also evaluated. Mortality rates and standardised morality ratios (SMRs) compared to the general population were calculated for each state, and by sex and age groups. Cox regression models were used to assess the risk of socio-demographic characteristics on mortality. Results: Mortality in people hospitalised with an ED (N = 19,697) was more than four times higher than the general population (SMR: 4.54), and highest in people aged 30–39 years (SMR: 13.32). Men hospitalised for EDs had a higher risk of death. Mortality rates in anorexia nervosa were not higher than other ED diagnoses. Almost three-quarters of deaths were caused by suicide/self-harm or cardio/respiratory illness. Conclusion: People accessing hospital care with EDs in Australia have a higher risk of premature death regardless of age, sex, or ED diagnosis. Gender and age group disparities can inform policy and resource allocation and support the development of targeted interventions.

  • Research Article
  • 10.23889/ijpds.v10i4.3144
Investigating the interplay of educational factors and mental health in children with orofacial clefts: A Record Linkage Study
  • Aug 28, 2025
  • International Journal of Population Data Science
  • Alexandros Rammos + 7 more

Objectives The purpose of this study is to examine the links between CL/P (Cleft Lip and/or Palate) in children, mental health, Special Education Needs (SEN)and educational outcomes. Furthermore, we aim to identify environmental causes of neurodevelopmental and mental health problems in children born with CL/P. MethodsWe will be linking Special Educational Needs, absence, and academic performance data from the National Pupil Database (NPD) with the Cleft Collective (CC) study, which includes 11,315 participants from 4,039 families, collected in 16 NHS cleft centres across the UK. Using multivariable regression models adjusted for NPD-linked confounders, we will analyse associations between mental health/neurodevelopmental trajectories and school-level factors (school absences and exclusions, Key Stage test scores). Results We estimate that we will request matching on approximately 3427 children from the Cleft Collective to the NPD. We will link those with questionnaires collected at recruitment (at prenatal CL/P diagnosis, at birth, or at 5 years) and at follow-ups at ages 18 months, 3, 5, 8, 10, 12 and 15 years. In addition to key outcomes (which include Key Stage 1 and 2 results) we also aim to explore secondary outcomes that might be relevant to the CC cohort (including absence and exclusion patterns). Conclusion Through this linkage we aim to foster a deeper understanding of the specific needs of children born with CL/P, to improve the validity and relevance of these findings, to ascertain causal pathways between cleft and mental health and how this relates to educational provision for this group.

  • Research Article
  • 10.23889/ijpds.v10i4.3079
Longitudinal trajectories of school exclusions among children in Welsh mainstream schools and their impact on attainment
  • Aug 28, 2025
  • International Journal of Population Data Science
  • Foteini Tseliou + 2 more

ObjectivesThis study examines the long-term impact of school exclusions on pupils, exploring how effects vary by timing and the cumulative impact of multiple exclusions throughout their education. MethodsA record linkage study combined education records, including attainment at age 11 (end of primary school) and age 16 (end of secondary school), with annual school exclusion data from age 11 to 16. Latent class growth analysis was used to construct longitudinal exclusion trajectories. Pupil characteristics, including the timing of special educational needs (SEN) identification and longitudinal free school meal (FSM) eligibility, were also analysed. ResultsFive exclusion trajectories were identified: no exclusions, low-level exclusions, early-rise exclusions, high-level age 16 exclusions, and late-rise exclusions. Pupil characteristics, particularly SEN type and provision, were strongly associated with frequent early-stage exclusions. Experiencing multiple exclusions at any stage significantly reduced the likelihood of passing any subject at age 16. High exclusion rates, particularly in early education, were linked to SEN status and lower attainment at the end of secondary school. ConclusionThese trajectories suggest that underlying factors driving school exclusions that may not be reflected in official records or school reports. Identifying these patterns can help policymakers and practitioners develop more targeted national and local guidance on school exclusion policies.

  • Research Article
  • 10.23889/ijpds.v10i3.3039
Mental health inequalities among underserved groups: evidence from the 2021 Census Northern Ireland
  • Aug 28, 2025
  • International Journal of Population Data Science
  • Sarah Mckenna + 2 more

ObjectivesMental health inequalities are a pressing public health issue, but population-level data on mental health need among underserved groups (USGs) is lacking. This census-based record linkage study examines mental ill health across seven USGs in Northern Ireland (NI) to support the effective formulation of policy and health service provision. MethodsUsing the Northern Ireland Mortality Study (NIMS), which links 2021 Census records to area-level measures and death registrations, we identified 1,489,210 individuals aged 16 years or older. The presence of a chronic mental health condition (measured through the Census) was examined among ethnic minorities, Irish Travellers, sexual minorities (lesbian, gay, bisexual and other (LGB+)), religious minorities, migrants, informal carers, and those with limited English language proficiency. Logistic regression models quantified the likelihood of mental ill health for each USG relative to the majority reference group adjusting for age, sex, income deprivation, socioeconomic status, limiting long-term health condition and general health. ResultsOverall, 10.5% (156,504) of the cohort reported a chronic mental health condition. Among minority populations, increased risk of mental ill health was evident for females from a Mixed ethnic background (adjusted Odds Ratio (aOR 1.19 [95% CI 1.07-1.33] vs White)), Irish Travellers (aOR=1.46 [95% CI 1.29-1.66] vs non-Irish Traveller), migrants from the rest of the UK or Republic of Ireland (aOR=1.07 [95% CI 1.04-1.09] vs born NI), those with no religious affiliation (aOR=1.32 [95% CI 1.30-1.35] vs Catholic), and informal carers (20+ hours, aOR=1.13 [95% CI 1.11-1.16] vs no unpaid care). People from the LGB+ group appear to be at particularly high risk of chronic mental ill health (aOR=3.25 [95% CI 3.15-3.35] vs heterosexual). ConclusionThe NI Census provides valuable insights into the mental health of USGs who are often missing from other available data. Risk of mental ill health varies significantly for some USGs relative to majority populations. Findings emphasize the need for service providers and policymakers to address mental health inequalities among USGs.

  • Research Article
  • 10.23889/ijpds.v10i4.3283
An Introduction to the Scottish Longitudinal Study (SLS)
  • Aug 28, 2025
  • International Journal of Population Data Science
  • Lee Williamson

ObjectiveThe Scottish Longitudinal Study (SLS) is a largescale research ready record-linkage study created and supported by the SLS Development and Support Unit (SLS-DSU). It links Census through time 1991-2022 to administrative data on major life events, maps changing residential location and for children, their progress through the educational system. MethodsThis paper will introduce the SLS as a data resource for researchers, the datasets held as part of it, along with the application process for using it. Census data are the building blocks of the SLS from 1991 onwards, for a 5% representative sample of the Scottish population (about 270,000 sample members each Census). The SLS links together a wealth of information from routinely collected administrative data, including vital events registrations (births, deaths and marriages), migration data, Scottish education data, and with appropriate additional permissions can be linked to NHS health data including cancer registry and hospital admission data. ResultsThe size and scope of the SLS make it an unparalleled research resource in Scotland for analysing a range of socio‐economic, demographic and health questions. Additionally, the longitudinal nature of the SLS is particularly valuable, allowing an exploration of causality in a way that cross‐sectional data collected at a single point in time does not. In this way, the SLS can provide insights into the health and social status of the Scottish population and, crucially, how it changes over time. The Scottish Census was a year behind the rest of the UK, with the 2022 Scottish Census data to be linked by SLS summer 2025. The 2025 ADR Conference is an excellent opportunity to showcase the 2022 Census data linkage results. ConclusionsThe paper will report on preliminary 2022 Census linkage results and SLS-DSU plans to extend research user access arrangements outside of Scotland. As part of the wider UK Census Longitudinal Studies (UKcenLS), the SLS aligns with the ONS-LS for England and Wales and the Northern Ireland LS, facilitating cross-UK analysis.

  • Research Article
  • 10.1136/bmjgast-2025-001831
Increased 30-day mortality associated with weekend emergency admission for alcohol-related liver disease in England: a record-linkage study using the Clinical Practice Research Datalink
  • Aug 1, 2025
  • BMJ Open Gastroenterology
  • Keith Bodger + 7 more

ObjectiveDeficiencies have been highlighted in acute hospital care for alcohol-related liver disease (ARLD). Such problems may be worse at weekends (WEs). Increased 30-day mortality for WE admissions has been reported for several acute conditions, but data for ARLD are limited. We aimed to compare patient and pathway characteristics between WE and weekday (WD) admissions and investigate the ‘weekend effect’ on mortality.MethodsRetrospective cohort study (2008–2018) using linked electronic databases (Hospital Episode Statistics-Clinical Practice Research Datalink and death registration) including 17 575 first emergency admissions identified using the Liverpool ARLD algorithm. Exposure: WE admission (Saturday or Sunday). Main outcome: all-cause death within 30 days. Covariates included socio-demographic characteristics, pathway characteristics (pre-admission contacts and admission method) and markers of severity (recorded stage of liver disease, ascites and varices, comorbidity). Alternative risk-adjustment methods were used, including standard regression and propensity-weighted analysis (Inverse Probability of Treatment Weighting).Results3249 admissions (18.5%) were at WE. Unadjusted 30-day mortality was significantly higher for WE versus WD (17.1% vs 15.5%, p=0.018). All models demonstrated increased odds of death for WE admissions with adjusted ORs ranging from 1.15 to 1.23 (relative risk of 1.12–1.19). Causes of death did not vary by admission day and effect was consistent across subgroups. Findings were robust to sensitivity analyses restricting the cohort to patients admitted directly from Accident and Emergency department (A&E), or cirrhosis or ascites but not varices.ConclusionFirst ARLD admissions at the WE experienced a 12–19% increase in 30-day mortality risk compared with WD. Although residual confounding cannot be excluded, this suggests the possibility of avoidable mortality among those hospitalised at WEs. Services should be alert to risks of WE effects when planning care.

  • Research Article
  • 10.1038/s44220-025-00429-z
A record-linkage study of post-stroke primary care psychological therapy effectiveness in England
  • Jun 1, 2025
  • Nature Mental Health
  • Jae Won Suh + 12 more

At least one-third of stroke survivors are affected by depression or anxiety, but no large-scale studies of real-world clinical practice have assessed whether psychological therapies are beneficial for these patients. Here we show that psychological treatment is effective for stroke survivors on average, using national healthcare records from National Health Service Talking Therapies services in England, including 7,597 patients with a hospital diagnosis of stroke before attendance. Following psychological treatment, stroke survivors experienced moderate reductions in depression and large reductions in anxiety symptoms. Patients who started attending the services a year or more after a stroke were less likely to reliably recover from symptoms of depression or anxiety than those seen within six months of a stroke, irrespective of differences in baseline characteristics including age, gender, local area deprivation and symptom severity. Compared with a matched sample of patients without a stroke, stroke survivors were less likely to reliably recover and more likely to reliably deteriorate after psychological treatment, although adjusting for level of physical comorbidity attenuated these relationships. It is crucial that clinicians working with stroke survivors screen for symptoms of depression and anxiety and consider referring patients to primary care psychological therapies as early as possible.

  • Research Article
  • Cite Count Icon 2
  • 10.3389/fpubh.2025.1551847
Viral load dynamics among adults receiving HIV care in rural North-Eastern South Africa, 2015-2020: insights from a population-based record linkage study.
  • May 7, 2025
  • Frontiers in public health
  • Armstrong Dzomba + 7 more

The Joint United Nations Programme on HIV/AIDS set ambitious-but-reachable targets to have 95% of HIV-positive people diagnosed, 95% on ART, and 95% virally suppressed by 2030. To address the latter, post-2016, South Africa's HIV treatment guidelines aimed to deliver maximal and durable viral load (VL) suppression through extensive antiretroviral therapy (ART) scale-up. Yet, standard suppression one-off measurement conceals viral response trajectories with high onward transmission potential for HIV patients on lifelong treatment. We investigated the dynamics of periodic VL patterns and associated socio-demographic factors in rural north-eastern South Africa using data from adults receiving HIV care in healthcare facilities within the Agincourt Health and Demographic Surveillance System (HDSS). We extracted two person-identified VL measurements collected 9-15 months apart per individual yearly between 2015 and 2020 from the Agincourt HDSS Hospital-Clinic-Linkage system for 7 493 HIV patients. Sankey diagrams were used to describe VL flows within and across the suppressed and unsuppressed statuses over each year. We classified temporal VL responses into four profiles: (i) Sustained suppression, (ii) achieved suppression, (iii) viral rebound, (iv) virologic failure. Additionally, mixed-effects multinomial logistic regression models were utilised to examine the odds of covariates factors for varied VL trajectories. The proportion of individuals remaining virally suppressed increased steadily from 84% in 2015 to 86% in 2016, with the highest prevalence of 88% sustained for three consecutive years, from 2017 through 2019, and then dropped slightly in 2020 to 87%. However, 2-3% of initially virally suppressed rebounded annually, while ~5% experience treatment failure. The likelihood of achieving viral suppression was high among men, those aged 15-24 years and 25-34 years however, these groups were less likely to have sustained viral suppression and more likely to experience virologic failure and rebounding. Temporal VL metrics are needed to effectively track progress towards reaching high and sustained HIV suppression potential in HIV hyperendemic settings. Thus, optimising the assessment of targeted interventions and identification of left-behind groups such as those younger, men, unmarried and poorer HIV patients to improve individual and population health outcomes.

  • Research Article
  • Cite Count Icon 1
  • 10.1111/ajco.14176
Metastatic Breast Cancer Prevalence in New South Wales, Australia, in 2016: A Health Record Linkage Study
  • Apr 29, 2025
  • Asia-Pacific Journal of Clinical Oncology
  • Andrea L Smith + 8 more

ABSTRACTAimTo estimate the number of females living with metastatic breast cancer (MBC) in New South Wales (NSW), Australia, in 2016 using linked health records.MethodsThe primary study dataset (cohort 1) included females in the NSW Cancer Registry (NSWCR) with breast cancer diagnosed during 2001–2002 and 2006–2007 linked with administrative hospital records, medicine dispensing, radiation services, and death records. From this dataset we counted the number with a record of de novo MBC or recurrent MBC (following stage I–III cancer) alive at the end of each year (2001–2015). The second dataset (cohort 2) included females with breast cancer diagnosed 2003–2005 and 2008–2015 without linked records. We imputed MBC prevalence for cohort 2 by calculating MBC prevalence proportions at the end of each year in cohort 1 and applying these proportions to NSWCR incidence counts in cohort 2.ResultsCohort 1 comprised 16,521 females with breast cancer, of whom 4364 had MBC recorded (976 de novo; 3388 recurrent). A total of 1245 individuals with MBC recorded were alive on January 1, 2016 (270 de novo, 21.7%; 975 recurrent, 78.3%). When extrapolated to all females diagnosed with breast cancer in 2001–2015 in NSW, 5009 individuals were estimated to be living with MBC on January 1, 2016 (1609 de novo, 32.1%; 3400 recurrent, 67.9%).ConclusionThis study estimates that a large number of individuals are living with MBC and demonstrates the importance of identifying individuals with recurrent MBC, in addition to de novo MBC, to inform funding and delivery of appropriate clinical and supportive care services.

  • Research Article
  • 10.1158/1538-7445.am2025-7390
Abstract 7390: Differences in cancer and all cause mortality among non Hispanic Black American adults by nativity and duration of U.S. residence: Findings from the 1997-2018 NHIS-NDI record linkage study
  • Apr 21, 2025
  • Cancer Research
  • Aminu K Abubakar + 2 more

Abstract Background: Non-Hispanic Black (NHB) Americans bear a high burden of cancer and all-cause mortality. Previous studies show that foreign-born individuals generally have lower cancer mortality rates, though declines are more pronounced among U.S.-born NHBs. This study examined differences in cancer and all-cause mortality risk between U.S.-born and foreign-born NHB adults, as well as by duration of U.S. residence among the foreign-born. Method: We used pooled data from the 1997–2018 National Health Interview Survey, linked to the National Death Index with follow-up through December 31, 2019, including 90,487 adult NHB participants. Cox regression models were used to estimate hazard ratios by place of birth and duration of residence in the U.S. after adjusting for sociodemographic and health behavior factors. Result: Among participants (61.1% women, mean age 46.5), 90.6% were U.S.-born, with an average follow-up of 10.9 years. U.S.-born individuals had a higher cancer mortality risk compared to foreign-born individuals (women: aHR 1.61; 95% CI 1.22–2.13 and men: aHR 1.33; 95% CI 1.04–1.69). For all-cause mortality, U.S.-born women (aHR = 1.64, 95% CI: 1.44–1.87) and men (aHR = 1.54, 95% CI: 1.35–1.75) had similarly increased risks. No significant differences in all-cause and cancer mortality were observed by duration of U.S. residence among foreign-born NHB adults. Conclusion: The intra-racial disparity in cancer and all-cause mortality has been continuously observed over the past several decades. Multi-pronged research strategies are needed to understand this disparity as well as to plan appropriate interventions to close this gap. Citation Format: Aminu K. Abubakar, Phoung T. Nguyen, Mahbubur Rahman. Differences in cancer and all cause mortality among non Hispanic Black American adults by nativity and duration of U.S. residence: Findings from the 1997-2018 NHIS-NDI record linkage study [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2025; Part 1 (Regular Abstracts); 2025 Apr 25-30; Chicago, IL. Philadelphia (PA): AACR; Cancer Res 2025;85(8_Suppl_1):Abstract nr 7390.

  • Open Access Icon
  • Research Article
  • 10.1111/1742-6723.70040
Characteristics and predictors of severe outcomes of COVID-19 cases presenting to the emergency department of a major Australian referral hospital: A record linkage study.
  • Apr 1, 2025
  • Emergency medicine Australasia : EMA
  • Katrina Boldt + 6 more

To describe the characteristics, outcomes and predictors of a severe outcome of patients presenting with a SARS-CoV-2 infection to the ED of a major urban referral hospital in New South Wales, Australia, from January 2020 through February 2022. Linked healthcare and death registration records were used and included any person assigned a diagnosis potentially related to an acute respiratory infection in the ED and that had a linked positive COVID-19 detection. Logistic regression was used to determine predictors of a severe outcome (ICU admission or death) within 28 days. Of 2081 included COVID-19 patients, 238 (11.4%) had a severe outcome within 28 days of arrival at the ED. Among adults, the odds of a severe outcome increased with age, although the rate of increase in odds within age groups was statistically significant only in 30-64-year-olds (4% per year of age; confidence interval [CI] 2-6). Ambulance arrival (odds ratio [OR] 2.85; CI 1.76-4.78), higher triage urgency (category 1 or 2 compared with 4 or 5: OR 8.63; CI 4.41-18.12), and presentation during the pre-Delta (OR 6.18; CI 3.59-10.66) and Delta (OR 3.64; 95% CI 2.49-5.35) variant periods (compared with Omicron) were independently associated with increased risk of a severe outcome. Age, ambulance arrival, higher triaged urgency, and presentation earlier in the pandemic were predictors of a severe COVID-19 outcome. Aged care measures and prioritising vaccination of older persons and aged care workers may have reduced severe outcomes in the elderly.

  • Research Article
  • Cite Count Icon 6
  • 10.1371/journal.pone.0319436
Evaluating the accuracy of ICD-10 codes for syncytial respiratory virus diagnosis in hospitalized patients: A record-linkage study (2022-2023).
  • Mar 28, 2025
  • PloS one
  • Ana Luiza Bierrenbach + 1 more

Respiratory Syncytial Virus (RSV) is a leading cause of severe respiratory infections in young children and older adults. Accurate RSV surveillance is essential to understanding its disease burden and evaluating vaccine impact. We assessed the accuracy of ICD-10 coding for RSV hospitalizations in the Brazilian Hospital Information System (SIH) by linking it with the Severe Acute Respiratory Syndrome (SIVEP) notification system (2022-2023). Laboratory-confirmed RSV-positive and RSV-negative cases in SIVEP were used as the reference standard. Sensitivity and specificity were evaluated for ICD-10 definitions (RSV, RSV + J21 [Acute Bronchiolitis], RSV + Acute Respiratory Infection) overall and by age group (under 1 year, under 5 years, and over 60 years). The top 10 diagnoses of RSV-positive patients were also analyzed by age group. Among 15,169 RSV-positive patients linked to an SIH record, 73.0% were under 12 months old, 20.8% were 1-5 years old, 3.7% were 5-59 years old, and 2.5% were 60 + years. Acute bronchiolitis was the most common diagnosis overall (43.5%), particularly in infants (53.5%). In older adults, pneumonia due to unspecified microorganisms was most frequent (24.6%). Sensitivity improved with broader case definitions, such as, RSV + Acute Respiratory Infection (66.7%, 95%CI: 65.8-67.6 in infants; 23%, 95%CI: 18.9-27.6 in older adults). Specificity was higher in older adults (83.8%, 95%CI: 83.5-84.1) than in infants (45.1%, 95%CI: 44.4-45.6). Additionally, 40,701 RSV-positive notified cases lacked RSV-coded diagnoses in SIH. Our study highlights the discrepancy between RSV-positive cases identified in SIVEP and those coded in the SIH database, reflecting limitations in ICD-10 coding, particularly in the older population. Reliance on symptomatic coding rather than confirmed diagnoses contributes to this issue. Accurate RSV identification is crucial, especially with new vaccines available. Improved diagnostic coding is essential for effective RSV surveillance and evaluating vaccine impact.

  • Research Article
  • Cite Count Icon 3
  • 10.1177/00048674251324824
Prevalence of psychiatric conditions in people with intellectual disability: A record linkage study in New South Wales, Australia
  • Mar 18, 2025
  • The Australian and New Zealand Journal of Psychiatry
  • Samuel Rc Arnold + 5 more

Objective:To compare the prevalence of psychiatric conditions in a population-based cohort of people with intellectual disability and matched comparators in New South Wales, Australia.Method:The study cohort included 97,644 people with intellectual disability and 451,502 comparators aged ⩾ 5 between 1 July 2001 to 30 June 2018. We used linked records of hospital admissions, emergency department presentations, ambulatory mental health service contacts, and Medicare rebates to identify any, serious, and specific psychiatric conditions.Results:People with intellectual disability showed greatly elevated period prevalence of any psychiatric condition (76.0% vs 38.3%), serious mental illness (16.2% vs 5.1%), and all specific psychiatric conditions compared to comparators. Among people with intellectual disability and congenital/developmental conditions, people with Down syndrome showed reduced risk of most psychiatric conditions while people with attention-deficit hyperactivity disorder and people with learning disorders showed increased risk. Age-specific analysis showed earlier onset of dementia and heightened prevalence of self-injury/suicidality in adulthood among people with intellectual disability. Annualised prevalence trends showed increases in 2006–2007 for most psychiatric conditions and decreases in 2014–2015 to 2017–2018.Conclusions:The higher prevalence of psychiatric conditions in people with intellectual disability indicates the importance of systemic responses to address the mental health needs of this population. Our findings highlight the importance of considering the psychiatric profiles of specific congenital/developmental conditions among people with intellectual disability, and the need to provide targeted services to high-risk groups such as those with co-occurring attention-deficit hyperactivity disorder.

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