ArticleBMJ open2022
Linkage of National Congenital Heart Disease Audit data to hospital, critical care and mortality national data sets to enable research focused on quality improvement.
Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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12 citing papers in PubMed.
- Pulmonary Atresia With Intact Septum Survival, Reintervention, and Days in Hospital Through Childhood: Contemporary Outcomes From a National Registry.Circulation. Cardiovascular interventions · 2026Article
- Contemporary outcomes of childhood aortic coarctation interventions: a national registry analysis of mortality, reinterventions and hospital resource use.Heart (British Cardiac Society) · 2026Article
- New Zealand Electronic Health Data for Cardiovascular Research: A Review.Clinical epidemiology · 2026Review
- Review
- Optimising Paediatric Transition to Intensive Care for Adults (OPTICAL): study protocol for a mixed method study.BMJ open · 2025Article
- Article
- Peripandemic outcomes of infants treated for sentinel congenital heart diseases in England and Wales.Open heart · 2025Article
- Secundum atrial septal defect closure in adults in the UK.European heart journal. Quality of care & clinical outcomes · 2025Observational
- Arterial Switch for Transposition of the Great Arteries: Treatment Timing, Late Outcomes, and Risk Factors.JACC. Advances · 2023Article
- Hospital resource utilization in a national cohort of functionally single ventricle patients undergoing surgical treatment.JTCVS open · 2023Article
- Pediatric intensive care unit admissions network-rationale, framework and method of operation of a nationwide collaborative pediatric intensive care research network in Germany.Frontiers in pediatrics · 2023Article
- Transfer of congenital heart patients from paediatric to adult services in England.Heart (British Cardiac Society) · 2022Article
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Authors and funding
12 authors.
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Abstract
objectivesTo link five national data sets (three registries, two administrative) and create longitudinal healthcare trajectories for patients with congenital heart disease (CHD), describing the quality and the summary statistics of the linked data set.
designBespoke linkage of record-level patient identifiers across five national data sets. Generation of spells of care defined as periods of time-overlapping events across the data sets.
settingNational Congenital Heart Disease Audit (NCHDA) procedures in public (National Health Service; NHS) hospitals in England and Wales, paediatric and adult intensive care data sets (Paediatric Intensive Care Audit Network; PICANet and the Case Mix Programme from the Intensive Care National Audit & Research Centre; ICNARC-CMP), administrative hospital episodes (hospital episode statistics; HES inpatient, outpatient, accident and emergency; A&E) and mortality registry data.
participantsPatients with any CHD procedure recorded in NCHDA between April 2000 and March 2017 from public hospitals. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary: number of linked records, number of unique patients and number of generated spells of care. Secondary: quality and completeness of linkage.
resultsThere were 143 862 records in NCHDA relating to 96 041 unique patients. We identified 65 797 linked PICANet patient admissions, 4664 linked ICNARC-CMP admissions and over 6 million linked HES episodes of care (1.1M inpatient, 4.7M outpatient). The linked data set had 4 908 153 spells of care after quality checks, with a median (IQR) of 3.4 (1.8-6.3) spells per patient-year. Where linkage was feasible (in terms of year and centre), 95.6% surgical procedure records were linked to a corresponding HES record, 93.9% paediatric (cardiac) surgery procedure records to a corresponding PICANet admission and 76.8% adult surgery procedure records to a corresponding ICNARC-CMP record.
conclusionsWe successfully linked four national data sets to the core data set of all CHD procedures performed between 2000 and 2017. This will enable a much richer analysis of longitudinal patient journeys and outcomes. We hope that our detailed description of the linkage process will be useful to others looking to link national data sets to address important research priorities.
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