Linkage of National Congenital Heart Disease Audit data to hospital, critical care and mortality national data sets to enable research focused on quality improvement.

Autor:	Espuny Pujol F; Clinical Operational Research Unit, Department of Mathematics, University College London, London, UK f.pujol@ucl.ac.uk., Pagel C; Clinical Operational Research Unit, Department of Mathematics, University College London, London, UK., Brown KL; Cardiorespiratory Division, NIHR Great Ormond Street Hospital Biomedical Research Centre, London, UK., Doidge JC; Intensive Care National Audit and Research Centre, London, UK., Feltbower RG; Leeds Institute for Data Analytics, School of Medicine, University of Leeds, Leeds, UK., Franklin RC; Department of Paediatric Cardiology, Royal Brompton & Harefield NHS Foundation Trust, London, UK., Gonzalez-Izquierdo A; Institute of Health Informatics, University College London, London, UK.; Health Data Research UK, London, UK., Gould DW; Intensive Care National Audit and Research Centre, London, UK., Norman LJ; Leeds Institute for Data Analytics, School of Medicine, University of Leeds, Leeds, UK., Stickley J; Department of Paediatric Cardiac Surgery, Birmingham Children's Hospital, Birmingham, UK., Taylor JA; Clinical Operational Research Unit, Department of Mathematics, University College London, London, UK., Crowe S; Clinical Operational Research Unit, Department of Mathematics, University College London, London, UK.
Jazyk:	angličtina
Zdroj:	BMJ open [BMJ Open] 2022 May 19; Vol. 12 (5), pp. e057343. Date of Electronic Publication: 2022 May 19.
DOI:	10.1136/bmjopen-2021-057343
Abstrakt:	Objectives: To 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. Design: Bespoke 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. Setting: National 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. Participants: Patients 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. Results: There 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. Conclusions: We 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. Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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