National quality register of congenital heart diseases – Can we trust the data?

• Main Authors: Amanda Bodell, Gudrun Björkhem, Ulf Thilén, Estelle Naumburg
• Format: Article
• Language: English
• Published: BMC 2017-12-01
• Series: Journal of Congenital Cardiology
• Subjects: Congenital heart defects; National Quality Register; Validation
• Online Access: http://link.springer.com/article/10.1186/s40949-017-0013-7

Abstract Background The SWEDish registry of CONgenital heart disease is a Swedish national quality register for collecting data on pediatric and adult (GUCH) patients with congenital heart diseases that aims to improve medical practice and research. The aim of this study was to validate data in the register using data in medical records. Methods This cross-sectional observational study compared specific variables from SWEDCON with data retrieved from medical records for 182 pediatric and 186 adult patients who were randomly selected from four different hospitals. Results The absolute concordance for date of visit, diagnosis, information on surgery and catheter intervention was 71–98% between SWEDCON and medical journals. The specificity for cardiac examinations and specific medical therapy was 71–100%. The concordance for information for transition from pediatric care to GUCH or finishing regular check-ups was 92%. Conclusion The overall concordance between data in SWEDCON-pediatric as well as SWEDCON-GUCH with data in medical records was good, and data from SWEDCON is reliable to use for medical improvements and for research purposes.