Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study

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Standard

Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study. / 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.

I: European Journal of Epidemiology, Bind 38, 2023, s. 325–334.

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt

Harvard

Bakker, MK, Loane, M, Garne, E, Ballardini, E, Cavero-Carbonell, C, García, L, Gissler, M, Given, J, Heino, A, Jamry-Dziurla, A, Jordan, S, Urhoj, SK, Latos-Bieleńska, A, Limb, E, Lutke, R, Neville, AJ, Pierini, A, Santoro, M, Scanlon, I, Tan, J, Wellesley, D, de Walle, HEK & Morris, JK 2023, 'Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study', European Journal of Epidemiology, bind 38, s. 325–334. https://doi.org/10.1007/s10654-023-00971-z

APA

Bakker, M. K., Loane, M., Garne, E., Ballardini, E., Cavero-Carbonell, C., García, L., Gissler, M., Given, J., Heino, A., Jamry-Dziurla, A., Jordan, S., Urhoj, S. K., Latos-Bieleńska, A., Limb, E., Lutke, R., Neville, A. J., Pierini, A., Santoro, M., Scanlon, I., ... Morris, J. K. (2023). Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study. European Journal of Epidemiology, 38, 325–334. https://doi.org/10.1007/s10654-023-00971-z

Vancouver

Bakker MK, Loane M, Garne E, Ballardini E, Cavero-Carbonell C, García L o.a. Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study. European Journal of Epidemiology. 2023;38:325–334. https://doi.org/10.1007/s10654-023-00971-z

Author

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. / Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study. I: European Journal of Epidemiology. 2023 ; Bind 38. s. 325–334.

Bibtex

@article{eed9e4a2e0c545c99380bb46176fe7b8,

title = "Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study",

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.",

author = "Bakker, {Marian K} and Maria Loane and Ester Garne and Elisa Ballardini and Clara Cavero-Carbonell and Laura Garc{\'i}a and Mika Gissler and Joanne Given and Anna Heino and Anna Jamry-Dziurla and Sue Jordan and Urhoj, {Stine Kjaer} and Anna Latos-Biele{\'n}ska and Elisabeth Limb and Renee Lutke and Neville, {Amanda J} and Anna Pierini and Michele Santoro and Ieuan Scanlon and Joachim Tan and Diana Wellesley and {de Walle}, {Hermien E K} and Morris, {Joan K}",

note = "{\textcopyright} 2023. The Author(s).",

year = "2023",

doi = "10.1007/s10654-023-00971-z",

language = "English",

volume = "38",

pages = "325–334",

journal = "European Journal of Epidemiology",

issn = "0393-2990",

publisher = "Springer",

}

RIS

TY - JOUR

T1 - Accuracy of congenital anomaly coding in live birth children recorded in European health care databases, a EUROlinkCAT study

AU - Bakker, Marian K

AU - Loane, Maria

AU - Garne, Ester

AU - Ballardini, Elisa

AU - Cavero-Carbonell, Clara

AU - García, Laura

AU - Gissler, Mika

AU - Given, Joanne

AU - Heino, Anna

AU - Jamry-Dziurla, Anna

AU - Jordan, Sue

AU - Urhoj, Stine Kjaer

AU - Latos-Bieleńska, Anna

AU - Limb, Elisabeth

AU - Lutke, Renee

AU - Neville, Amanda J

AU - Pierini, Anna

AU - Santoro, Michele

AU - Scanlon, Ieuan

AU - Tan, Joachim

AU - Wellesley, Diana

AU - de Walle, Hermien E K

AU - Morris, Joan K

PY - 2023

Y1 - 2023

N2 - 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.

AB - 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.

U2 - 10.1007/s10654-023-00971-z

DO - 10.1007/s10654-023-00971-z

M3 - Journal article

C2 - 36807730

VL - 38

SP - 325

EP - 334

JO - European Journal of Epidemiology

JF - European Journal of Epidemiology

SN - 0393-2990

ER -

ID: 337288655