Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study
Electronic health care databases are increasingly being used to investigate the epidemiology of congenital anomalies (CAs) although there are concerns about their accuracy. The EUROlinkCAT project linked data from eleven EUROCAT registries to electronic hospital databases. The coding of CAs in elect...
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| Veröffentlicht in: | European journal of epidemiology 2023-03, Vol.38 (3), p.325-334 |
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| creator | Bakker, Marian K. Loane, Maria Garne, Ester Ballardini, Elisa Cavero-Carbonell, Clara García, Laura Gissler, Mika Given, Joanne Heino, Anna Jamry-Dziurla, Anna Jordan, Sue Urhoj, Stine Kjaer Latos-Bieleńska, Anna Limb, Elisabeth Lutke, Renee Neville, Amanda J. Pierini, Anna Santoro, Michele Scanlon, Ieuan Tan, Joachim Wellesley, Diana de Walle, Hermien E. K. Morris, Joan K. |
| description | Electronic health care databases are increasingly being used to investigate the epidemiology of congenital anomalies (CAs) although there are concerns about their accuracy. The EUROlinkCAT project linked data from eleven EUROCAT registries to electronic hospital databases. The coding of CAs in electronic hospital databases was compared to the (gold standard) codes in the EUROCAT registries. For birth years 2010–2014 all linked live birth CA cases and all children identified in the hospital databases with a CA code were analysed. Registries calculated sensitivity and Positive Predictive Value (PPV) for 17 selected CAs. Pooled estimates for sensitivity and PPV were then calculated for each anomaly using random effects meta-analyses. Most registries linked more than 85% of their cases to hospital data. Gastroschisis, cleft lip with or without cleft palate and Down syndrome were recorded in hospital databases with high accuracy (sensitivity and PPV ≥ 85%). Hypoplastic left heart syndrome, spina bifida, Hirschsprung’s disease, omphalocele and cleft palate showed high sensitivity (≥ 85%), but low or heterogeneous PPV, indicating that hospital data was complete but may contain false positives. The remaining anomaly subgroups in our study, showed low or heterogeneous sensitivity and PPV, indicating that the information in the hospital database was incomplete and of variable validity. Electronic health care databases cannot replace CA registries, although they can be used as an additional ascertainment source for CA registries. CA registries are still the most appropriate data source to study the epidemiology of CAs. |
| doi_str_mv | 10.1007/s10654-023-00971-z |
| format | Article |
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K. ; Morris, Joan K.</creator><creatorcontrib>Bakker, Marian K. ; Loane, Maria ; Garne, Ester ; Ballardini, Elisa ; Cavero-Carbonell, Clara ; García, Laura ; Gissler, Mika ; Given, Joanne ; Heino, Anna ; Jamry-Dziurla, Anna ; Jordan, Sue ; Urhoj, Stine Kjaer ; Latos-Bieleńska, Anna ; Limb, Elisabeth ; Lutke, Renee ; Neville, Amanda J. ; Pierini, Anna ; Santoro, Michele ; Scanlon, Ieuan ; Tan, Joachim ; Wellesley, Diana ; de Walle, Hermien E. K. ; Morris, Joan K.</creatorcontrib><description>Electronic health care databases are increasingly being used to investigate the epidemiology of congenital anomalies (CAs) although there are concerns about their accuracy. The EUROlinkCAT project linked data from eleven EUROCAT registries to electronic hospital databases. The coding of CAs in electronic hospital databases was compared to the (gold standard) codes in the EUROCAT registries. For birth years 2010–2014 all linked live birth CA cases and all children identified in the hospital databases with a CA code were analysed. Registries calculated sensitivity and Positive Predictive Value (PPV) for 17 selected CAs. Pooled estimates for sensitivity and PPV were then calculated for each anomaly using random effects meta-analyses. Most registries linked more than 85% of their cases to hospital data. Gastroschisis, cleft lip with or without cleft palate and Down syndrome were recorded in hospital databases with high accuracy (sensitivity and PPV ≥ 85%). Hypoplastic left heart syndrome, spina bifida, Hirschsprung’s disease, omphalocele and cleft palate showed high sensitivity (≥ 85%), but low or heterogeneous PPV, indicating that hospital data was complete but may contain false positives. The remaining anomaly subgroups in our study, showed low or heterogeneous sensitivity and PPV, indicating that the information in the hospital database was incomplete and of variable validity. Electronic health care databases cannot replace CA registries, although they can be used as an additional ascertainment source for CA registries. CA registries are still the most appropriate data source to study the epidemiology of CAs.</description><identifier>ISSN: 0393-2990</identifier><identifier>EISSN: 1573-7284</identifier><identifier>DOI: 10.1007/s10654-023-00971-z</identifier><identifier>PMID: 36807730</identifier><language>eng</language><publisher>Dordrecht: Springer Netherlands</publisher><subject>Accuracy ; Birth ; Birth defects ; Cardiology ; Child ; Cleft Lip - epidemiology ; Cleft lip/palate ; Cleft Palate - epidemiology ; Coding ; Congenital Abnormalities - epidemiology ; Congenital anomalies ; Congenital defects ; Delivery of Health Care ; Down's syndrome ; Epidemiology ; Female ; Health care ; Hirschsprung's disease ; Humans ; Infectious Diseases ; Live Birth ; Mathematical analysis ; Medicine ; Medicine & Public Health ; Oncology ; Pregnancy ; Public Health ; Registries ; Reproductive Epidemiology ; Sensitivity analysis ; Spina bifida ; Subgroups</subject><ispartof>European journal of epidemiology, 2023-03, Vol.38 (3), p.325-334</ispartof><rights>The Author(s) 2023</rights><rights>2023. The Author(s).</rights><rights>The Author(s) 2023. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). 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K.</creatorcontrib><creatorcontrib>Morris, Joan K.</creatorcontrib><title>Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study</title><title>European journal of epidemiology</title><addtitle>Eur J Epidemiol</addtitle><addtitle>Eur J Epidemiol</addtitle><description>Electronic health care databases are increasingly being used to investigate the epidemiology of congenital anomalies (CAs) although there are concerns about their accuracy. The EUROlinkCAT project linked data from eleven EUROCAT registries to electronic hospital databases. The coding of CAs in electronic hospital databases was compared to the (gold standard) codes in the EUROCAT registries. For birth years 2010–2014 all linked live birth CA cases and all children identified in the hospital databases with a CA code were analysed. Registries calculated sensitivity and Positive Predictive Value (PPV) for 17 selected CAs. Pooled estimates for sensitivity and PPV were then calculated for each anomaly using random effects meta-analyses. Most registries linked more than 85% of their cases to hospital data. Gastroschisis, cleft lip with or without cleft palate and Down syndrome were recorded in hospital databases with high accuracy (sensitivity and PPV ≥ 85%). Hypoplastic left heart syndrome, spina bifida, Hirschsprung’s disease, omphalocele and cleft palate showed high sensitivity (≥ 85%), but low or heterogeneous PPV, indicating that hospital data was complete but may contain false positives. The remaining anomaly subgroups in our study, showed low or heterogeneous sensitivity and PPV, indicating that the information in the hospital database was incomplete and of variable validity. Electronic health care databases cannot replace CA registries, although they can be used as an additional ascertainment source for CA registries. 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K.</au><au>Morris, Joan K.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study</atitle><jtitle>European journal of epidemiology</jtitle><stitle>Eur J Epidemiol</stitle><addtitle>Eur J Epidemiol</addtitle><date>2023-03-01</date><risdate>2023</risdate><volume>38</volume><issue>3</issue><spage>325</spage><epage>334</epage><pages>325-334</pages><issn>0393-2990</issn><eissn>1573-7284</eissn><abstract>Electronic health care databases are increasingly being used to investigate the epidemiology of congenital anomalies (CAs) although there are concerns about their accuracy. The EUROlinkCAT project linked data from eleven EUROCAT registries to electronic hospital databases. The coding of CAs in electronic hospital databases was compared to the (gold standard) codes in the EUROCAT registries. For birth years 2010–2014 all linked live birth CA cases and all children identified in the hospital databases with a CA code were analysed. Registries calculated sensitivity and Positive Predictive Value (PPV) for 17 selected CAs. Pooled estimates for sensitivity and PPV were then calculated for each anomaly using random effects meta-analyses. Most registries linked more than 85% of their cases to hospital data. Gastroschisis, cleft lip with or without cleft palate and Down syndrome were recorded in hospital databases with high accuracy (sensitivity and PPV ≥ 85%). Hypoplastic left heart syndrome, spina bifida, Hirschsprung’s disease, omphalocele and cleft palate showed high sensitivity (≥ 85%), but low or heterogeneous PPV, indicating that hospital data was complete but may contain false positives. The remaining anomaly subgroups in our study, showed low or heterogeneous sensitivity and PPV, indicating that the information in the hospital database was incomplete and of variable validity. Electronic health care databases cannot replace CA registries, although they can be used as an additional ascertainment source for CA registries. CA registries are still the most appropriate data source to study the epidemiology of CAs.</abstract><cop>Dordrecht</cop><pub>Springer Netherlands</pub><pmid>36807730</pmid><doi>10.1007/s10654-023-00971-z</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0001-5098-6400</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0393-2990 |
| ispartof | European journal of epidemiology, 2023-03, Vol.38 (3), p.325-334 |
| issn | 0393-2990 1573-7284 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_10033551 |
| source | MEDLINE; Springer Nature - Complete Springer Journals |
| subjects | Accuracy Birth Birth defects Cardiology Child Cleft Lip - epidemiology Cleft lip/palate Cleft Palate - epidemiology Coding Congenital Abnormalities - epidemiology Congenital anomalies Congenital defects Delivery of Health Care Down's syndrome Epidemiology Female Health care Hirschsprung's disease Humans Infectious Diseases Live Birth Mathematical analysis Medicine Medicine & Public Health Oncology Pregnancy Public Health Registries Reproductive Epidemiology Sensitivity analysis Spina bifida Subgroups |
| title | Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study |
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