Dataset Information

Prevalence of Down's Syndrome in England, 1998-2013: Comparison of linked surveillance data and electronic health records.

ABSTRACT:

Introduction

Disease registers and electronic health records are valuable resources for disease surveillance and research but can be limited by variation in data quality over time. Quality may be limited in terms of the accuracy of clinical information, of the internal linkage that supports person-based analysis of most administrative datasets, or by errors in linkage between multiple datasets.

Objectives

By linking the National Down Syndrome Cytogenetic Register (NDSCR) to Hospital Episode Statistics for England (HES), we aimed to assess the quality of each and establish a consistent approach for analysis of trends in prevalence of Down's syndrome among live births in England.

Methods

Probabilistic record linkage of NDSCR to HES for the period 1998-2013 was supported by linkage of babies to mothers within HES. Comparison of prevalence estimates in England were made using NDSCR only, HES data only, and linked data. Capture-recapture analysis and quantitative bias analysis were used to account for potential errors, including false positive diagnostic codes, unrecorded diagnoses, and linkage error.

Results

Analyses of single-source data indicated increasing live birth prevalence of Down's Syndrome, particularly in the analysis of HES. Linked data indicated a contrastingly stable prevalence of 12.3 (plausible range: 11.6-12.7) cases per 10 000 live births.

Conclusion

Case ascertainment in NDSCR improved slightly over time, creating a picture of slowly increasing prevalence. The emerging epidemic suggested by HES primarily reflects improving linkage within HES (assignment of unique patient identifiers to hospital episodes). Administrative data are valuable but trends should be interpreted with caution, and with assessment of data quality over time. Data linkage with quantitative bias analysis can provide more robust estimation and, in this case, stronger evidence that prevalence is not increasing. Routine linkage of administrative and register data can enhance the value of each.

SUBMITTER: Doidge JC

PROVIDER: S-EPMC7115985 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Post-market medical device surveillance is a challenge facing manufacturers, regulatory agencies, and health care providers. Electronic health records are valuable sources of real-world evidence for assessing device safety and tracking device-related patient outcomes over time. However, distilling this evidence remains challenging, as information is fractured across clinical notes and structured records. Modern machine learning methods for machine reading promise to unlock increasingly complex information from text, but face barriers due to their reliance on large and expensive hand-labeled training sets. To address these challenges, we developed and validated state-of-the-art deep learning methods that identify patient outcomes from clinical notes without requiring hand-labeled training data. Using hip replacements-one of the most common implantable devices-as a test case, our methods accurately extracted implant details and reports of complications and pain from electronic health records with up to 96.3% precision, 98.5% recall, and 97.4% F1, improved classification performance by 12.8-53.9% over rule-based methods, and detected over six times as many complication events compared to using structured data alone. Using these additional events to assess complication-free survivorship of different implant systems, we found significant variation between implants, including for risk of revision surgery, which could not be detected using coded data alone. Patients with revision surgeries had more hip pain mentions in the post-hip replacement, pre-revision period compared to patients with no evidence of revision surgery (mean hip pain mentions 4.97 vs. 3.23; t?=?5.14; p?<?0.001). Some implant models were associated with higher or lower rates of hip pain mentions. Our methods complement existing surveillance mechanisms by requiring orders of magnitude less hand-labeled training data, offering a scalable solution for national medical device surveillance using electronic health records.

Project description:BACKGROUND:Administrative health records (AHRs) and electronic medical records (EMRs) are two key sources of population-based data for disease surveillance, but misclassification errors in the data can bias disease estimates. Methods that combine information from error-prone data sources can build on the strengths of AHRs and EMRs. We compared bias and error for four data-combining methods and applied them to estimate hypertension prevalence. METHODS:Our study included rule-based OR and AND methods that identify disease cases from either or both data sources, respectively, rule-based sensitivity-specificity adjusted (RSSA) method that corrects for inaccuracies using a deterministic rule, and probabilistic-based sensitivity-specificity adjusted (PSSA) method that corrects for error using a statistical model. Computer simulation was used to estimate relative bias (RB) and mean square error (MSE) under varying conditions of population disease prevalence, correlation amongst data sources, and amount of misclassification error. AHRs and EMRs for Manitoba, Canada were used to estimate hypertension prevalence using validated case definitions and multiple disease markers. RESULTS:The OR method had the lowest RB and MSE when population disease prevalence was 10%, and the RSSA method had the lowest RB and MSE when population prevalence increased to 20%. As the correlation between data sources increased, the OR method resulted in the lowest RB and MSE. Estimates of hypertension prevalence for AHRs and EMRs alone were 30.9% (95% CI: 30.6-31.2) and 24.9% (95% CI: 24.6-25.2), respectively. The estimates were 21.4% (95% CI: 21.1-21.7), for the AND method, 34.4% (95% CI: 34.1-34.8) for the OR method, 32.2% (95% CI: 31.8-32.6) for the RSSA method, and ranged from 34.3% (95% CI: 34.1-34.5) to 35.9% (95% CI, 35.7-36.1) for the PSSA method, depending on the statistical model. CONCLUSIONS:The OR and AND methods are influenced by correlation amongst the data sources, while the RSSA method is dependent on the accuracy of prior sensitivity and specificity estimates. The PSSA method performed well when population prevalence was high and average correlations amongst disease markers was low. This study will guide researchers to select a data-combining method that best suits their data characteristics.

Project description:ObjectiveTo describe a novel England-wide electronic health record (EHR) resource enabling whole population research on covid-19 and cardiovascular disease while ensuring data security and privacy and maintaining public trust.DesignData resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital's new trusted research environment.SettingEHRs from primary care, hospital episodes, death registry, covid-19 laboratory test results, and community dispensing data, with further enrichment planned from specialist intensive care, cardiovascular, and covid-19 vaccination data.Participants54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England.Main measures of interestConfirmed and suspected covid-19 diagnoses, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack and incident myocardial infarction) and all cause mortality between 1 January and 31 October 2020.ResultsThe linked cohort includes more than 96% of the English population. By combining person level data across national healthcare settings, data on age, sex, and ethnicity are complete for around 95% of the population. Among 53.3 million people with no previous diagnosis of stroke or transient ischaemic attack, 98 721 had a first ever incident stroke or transient ischaemic attack between 1 January and 31 October 2020, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.2 million people with no previous diagnosis of myocardial infarction, 62 966 had an incident myocardial infarction during follow-up, of which 8% were recorded only in primary care and 12% only in death registry records. A total of 959 470 people had a confirmed or suspected covid-19 diagnosis (714 162 in primary care data, 126 349 in hospital admission records, 776 503 in covid-19 laboratory test data, and 50 504 in death registry records). Although 58% of these were recorded in both primary care and covid-19 laboratory test data, 15% and 18%, respectively, were recorded in only one.ConclusionsThis population-wide resource shows the importance of linking person level data across health settings to maximise completeness of key characteristics and to ascertain cardiovascular events and covid-19 diagnoses. Although this resource was initially established to support research on covid-19 and cardiovascular disease to benefit clinical care and public health and to inform healthcare policy, it can broaden further to enable a wide range of research.

Project description:BackgroundHypertension is the most prevalent risk factor for mortality globally. Uncontrolled hypertension is associated with excess morbidity and mortality, and nearly one-half of individuals with hypertension do not have the condition under control. Data from electronic health record (EHR) systems may be useful for community hypertension surveillance, filling a gap in local public health departments' community health assessments and supporting the public health data modernization initiatives currently underway. To identify patients with hypertension, computable phenotypes are required. These phenotypes leverage available data elements-such as vitals measurements and medications-to identify patients diagnosed with hypertension. However, there are multiple methodologies for creating a phenotype, and the identification of which method most accurately reflects real-world prevalence rates is needed to support data modernization initiatives.ObjectiveThis study sought to assess the comparability of 6 different EHR-based hypertension prevalence estimates with estimates from a national survey. Each of the prevalence estimates was created using a different computable phenotype. The overarching goal is to identify which phenotypes most closely align with nationally accepted estimations.MethodsUsing the 6 different EHR-based computable phenotypes, we calculated hypertension prevalence estimates for Marion County, Indiana, for the period from 2014 to 2015. We extracted hypertension rates from the Behavioral Risk Factor Surveillance System (BRFSS) for the same period. We used the two 1-sided t test (TOST) to test equivalence between BRFSS- and EHR-based prevalence estimates. The TOST was performed at the overall level as well as stratified by age, gender, and race.ResultsUsing both 80% and 90% CIs, the TOST analysis resulted in 2 computable phenotypes demonstrating rough equivalence to BRFSS estimates. Variation in performance was noted across phenotypes as well as demographics. TOST with 80% CIs demonstrated that the phenotypes had less variance compared to BRFSS estimates within subpopulations, particularly those related to racial categories. Overall, less variance occurred on phenotypes that included vitals measurements.ConclusionsThis study demonstrates that certain EHR-derived prevalence estimates may serve as rough substitutes for population-based survey estimates. These outcomes demonstrate the importance of critically assessing which data elements to include in EHR-based computer phenotypes. Using comprehensive data sources, containing complete clinical data as well as data representative of the population, are crucial to producing robust estimates of chronic disease. As public health departments look toward data modernization activities, the EHR may serve to assist in more timely, locally representative estimates for chronic disease prevalence.