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Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study

Michele Santoro Orcid Logo, Alessio Coi, Anna Pierini, Judith Rankin, Svetlana V. Glinianaia, Joachim Tan, Abigail Reid, Ester Garne, Maria Loane, Joanne Given Orcid Logo, Amaia Aizpurua, Gianni Astolfi, Ingeborg Barisic, Clara Cavero‐Carbonell, Hermien E. K. de Walle, Elly Den Hond, Laura García‐Villodre, Miriam Gatt, Mika Gissler, Sue Jordan Orcid Logo, Babak Khoshnood Orcid Logo, Sonja Kiuru‐Kuhlefelt, Kari Klungsøyr, Nathalie Lelong, Renée Lutke, Olatz Mokoroa Orcid Logo, Vera Nelen, Amanda J. Neville, Ljubica Odak, Anke Rissmann Orcid Logo, Ieuan Scanlon, Stine Kjaer Urhoj, Diana Wellesley, Wladimir Wertelecki, Lyubov Yevtushok, Joan K. Morris Orcid Logo

Paediatric and Perinatal Epidemiology, Volume: 36, Issue: 6, Pages: 792 - 803

Swansea University Authors: Sue Jordan Orcid Logo, Ieuan Scanlon

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DOI (Published version): 10.1111/ppe.12884

Abstract

BackgroundCongenital anomalies are a major cause of perinatal, neonatal and infant mortality.ObjectivesThe aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas.MethodsIn this population-based linka...

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Published in: Paediatric and Perinatal Epidemiology
ISSN: 0269-5022 1365-3016
Published: Wiley 2022
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fullrecord <?xml version="1.0"?><rfc1807><datestamp>2023-01-04T14:48:32.3458193</datestamp><bib-version>v2</bib-version><id>60676</id><entry>2022-07-28</entry><title>Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi&#x2010;registry cohort study</title><swanseaauthors><author><sid>24ce9db29b4bde1af4e83b388aae0ea1</sid><ORCID>0000-0002-5691-2987</ORCID><firstname>Sue</firstname><surname>Jordan</surname><name>Sue Jordan</name><active>true</active><ethesisStudent>false</ethesisStudent></author><author><sid>9fcb224c6bd804a4d41a2a8570a71185</sid><firstname>Ieuan</firstname><surname>Scanlon</surname><name>Ieuan Scanlon</name><active>true</active><ethesisStudent>false</ethesisStudent></author></swanseaauthors><date>2022-07-28</date><deptcode>HNU</deptcode><abstract>BackgroundCongenital anomalies are a major cause of perinatal, neonatal and infant mortality.ObjectivesThe aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas.MethodsIn this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan&#x2013;Meier survival at 28&#x2009;days and 5&#x2009;years of age and fitted Cox's proportional hazards models comparing mortality at 1&#x2009;year and 1&#x2013;9&#x2009;years of age for children born during 2005&#x2013;2014 with those born during 1995&#x2013;2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28&#x2009;days of age was calculated.ResultsThe overall risk of death by 1&#x2009;year of age for children born with any major CA in 2005&#x2013;2014 decreased compared to 1995&#x2013;2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5&#x2009;years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9).ConclusionsSurvival of children with CAs improved for births in 2005&#x2013;2014 compared with 1995&#x2013;2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.</abstract><type>Journal Article</type><journal>Paediatric and Perinatal Epidemiology</journal><volume>36</volume><journalNumber>6</journalNumber><paginationStart>792</paginationStart><paginationEnd>803</paginationEnd><publisher>Wiley</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>0269-5022</issnPrint><issnElectronic>1365-3016</issnElectronic><keywords>cohort study; congenital anomalies; registry; survival</keywords><publishedDay>8</publishedDay><publishedMonth>6</publishedMonth><publishedYear>2022</publishedYear><publishedDate>2022-06-08</publishedDate><doi>10.1111/ppe.12884</doi><url/><notes/><college>COLLEGE NANME</college><department>Nursing</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>HNU</DepartmentCode><institution>Swansea University</institution><apcterm>Another institution paid the OA fee</apcterm><funders>This project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No. 733001 (Jan 2017 &#x2013; Dec 2021) (https://ec.europa.eu/programmes/horizon202 0/en).</funders><projectreference/><lastEdited>2023-01-04T14:48:32.3458193</lastEdited><Created>2022-07-28T22:00:52.4215773</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">School of Health and Social Care - Nursing</level></path><authors><author><firstname>Michele</firstname><surname>Santoro</surname><orcid>0000-0003-0676-3036</orcid><order>1</order></author><author><firstname>Alessio</firstname><surname>Coi</surname><order>2</order></author><author><firstname>Anna</firstname><surname>Pierini</surname><order>3</order></author><author><firstname>Judith</firstname><surname>Rankin</surname><order>4</order></author><author><firstname>Svetlana V.</firstname><surname>Glinianaia</surname><order>5</order></author><author><firstname>Joachim</firstname><surname>Tan</surname><order>6</order></author><author><firstname>Abigail</firstname><surname>Reid</surname><order>7</order></author><author><firstname>Ester</firstname><surname>Garne</surname><order>8</order></author><author><firstname>Maria</firstname><surname>Loane</surname><order>9</order></author><author><firstname>Joanne</firstname><surname>Given</surname><orcid>0000-0003-4921-1944</orcid><order>10</order></author><author><firstname>Amaia</firstname><surname>Aizpurua</surname><order>11</order></author><author><firstname>Gianni</firstname><surname>Astolfi</surname><order>12</order></author><author><firstname>Ingeborg</firstname><surname>Barisic</surname><order>13</order></author><author><firstname>Clara</firstname><surname>Cavero&#x2010;Carbonell</surname><order>14</order></author><author><firstname>Hermien E. K. de</firstname><surname>Walle</surname><order>15</order></author><author><firstname>Elly Den</firstname><surname>Hond</surname><order>16</order></author><author><firstname>Laura</firstname><surname>Garc&#xED;a&#x2010;Villodre</surname><order>17</order></author><author><firstname>Miriam</firstname><surname>Gatt</surname><order>18</order></author><author><firstname>Mika</firstname><surname>Gissler</surname><order>19</order></author><author><firstname>Sue</firstname><surname>Jordan</surname><orcid>0000-0002-5691-2987</orcid><order>20</order></author><author><firstname>Babak</firstname><surname>Khoshnood</surname><orcid>0000-0002-4031-4915</orcid><order>21</order></author><author><firstname>Sonja</firstname><surname>Kiuru&#x2010;Kuhlefelt</surname><order>22</order></author><author><firstname>Kari</firstname><surname>Klungs&#xF8;yr</surname><order>23</order></author><author><firstname>Nathalie</firstname><surname>Lelong</surname><order>24</order></author><author><firstname>Ren&#xE9;e</firstname><surname>Lutke</surname><order>25</order></author><author><firstname>Olatz</firstname><surname>Mokoroa</surname><orcid>0000-0003-3831-6089</orcid><order>26</order></author><author><firstname>Vera</firstname><surname>Nelen</surname><order>27</order></author><author><firstname>Amanda J.</firstname><surname>Neville</surname><order>28</order></author><author><firstname>Ljubica</firstname><surname>Odak</surname><order>29</order></author><author><firstname>Anke</firstname><surname>Rissmann</surname><orcid>0000-0002-9437-2790</orcid><order>30</order></author><author><firstname>Ieuan</firstname><surname>Scanlon</surname><order>31</order></author><author><firstname>Stine Kjaer</firstname><surname>Urhoj</surname><order>32</order></author><author><firstname>Diana</firstname><surname>Wellesley</surname><order>33</order></author><author><firstname>Wladimir</firstname><surname>Wertelecki</surname><order>34</order></author><author><firstname>Lyubov</firstname><surname>Yevtushok</surname><order>35</order></author><author><firstname>Joan K.</firstname><surname>Morris</surname><orcid>0000-0002-7164-612x</orcid><order>36</order></author></authors><documents><document><filename>60676__24837__34c0f94e92c1467f93a56c87b78a5320.pdf</filename><originalFilename>60676.pdf</originalFilename><uploaded>2022-08-04T11:42:00.6222162</uploaded><type>Output</type><contentLength>622351</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9; 2022 The Authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>http://creativecommons.org/licenses/by-nc-nd/4.0/</licence></document></documents><OutputDurs/></rfc1807>
spelling 2023-01-04T14:48:32.3458193 v2 60676 2022-07-28 Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study 24ce9db29b4bde1af4e83b388aae0ea1 0000-0002-5691-2987 Sue Jordan Sue Jordan true false 9fcb224c6bd804a4d41a2a8570a71185 Ieuan Scanlon Ieuan Scanlon true false 2022-07-28 HNU BackgroundCongenital anomalies are a major cause of perinatal, neonatal and infant mortality.ObjectivesThe aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas.MethodsIn this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan–Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1–9 years of age for children born during 2005–2014 with those born during 1995–2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated.ResultsThe overall risk of death by 1 year of age for children born with any major CA in 2005–2014 decreased compared to 1995–2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9).ConclusionsSurvival of children with CAs improved for births in 2005–2014 compared with 1995–2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs. Journal Article Paediatric and Perinatal Epidemiology 36 6 792 803 Wiley 0269-5022 1365-3016 cohort study; congenital anomalies; registry; survival 8 6 2022 2022-06-08 10.1111/ppe.12884 COLLEGE NANME Nursing COLLEGE CODE HNU Swansea University Another institution paid the OA fee This project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No. 733001 (Jan 2017 – Dec 2021) (https://ec.europa.eu/programmes/horizon202 0/en). 2023-01-04T14:48:32.3458193 2022-07-28T22:00:52.4215773 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Nursing Michele Santoro 0000-0003-0676-3036 1 Alessio Coi 2 Anna Pierini 3 Judith Rankin 4 Svetlana V. Glinianaia 5 Joachim Tan 6 Abigail Reid 7 Ester Garne 8 Maria Loane 9 Joanne Given 0000-0003-4921-1944 10 Amaia Aizpurua 11 Gianni Astolfi 12 Ingeborg Barisic 13 Clara Cavero‐Carbonell 14 Hermien E. K. de Walle 15 Elly Den Hond 16 Laura García‐Villodre 17 Miriam Gatt 18 Mika Gissler 19 Sue Jordan 0000-0002-5691-2987 20 Babak Khoshnood 0000-0002-4031-4915 21 Sonja Kiuru‐Kuhlefelt 22 Kari Klungsøyr 23 Nathalie Lelong 24 Renée Lutke 25 Olatz Mokoroa 0000-0003-3831-6089 26 Vera Nelen 27 Amanda J. Neville 28 Ljubica Odak 29 Anke Rissmann 0000-0002-9437-2790 30 Ieuan Scanlon 31 Stine Kjaer Urhoj 32 Diana Wellesley 33 Wladimir Wertelecki 34 Lyubov Yevtushok 35 Joan K. Morris 0000-0002-7164-612x 36 60676__24837__34c0f94e92c1467f93a56c87b78a5320.pdf 60676.pdf 2022-08-04T11:42:00.6222162 Output 622351 application/pdf Version of Record true © 2022 The Authors. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License true eng http://creativecommons.org/licenses/by-nc-nd/4.0/
title Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
spellingShingle Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
Sue Jordan
Ieuan Scanlon
title_short Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
title_full Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
title_fullStr Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
title_full_unstemmed Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
title_sort Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi‐registry cohort study
author_id_str_mv 24ce9db29b4bde1af4e83b388aae0ea1
9fcb224c6bd804a4d41a2a8570a71185
author_id_fullname_str_mv 24ce9db29b4bde1af4e83b388aae0ea1_***_Sue Jordan
9fcb224c6bd804a4d41a2a8570a71185_***_Ieuan Scanlon
author Sue Jordan
Ieuan Scanlon
author2 Michele Santoro
Alessio Coi
Anna Pierini
Judith Rankin
Svetlana V. Glinianaia
Joachim Tan
Abigail Reid
Ester Garne
Maria Loane
Joanne Given
Amaia Aizpurua
Gianni Astolfi
Ingeborg Barisic
Clara Cavero‐Carbonell
Hermien E. K. de Walle
Elly Den Hond
Laura García‐Villodre
Miriam Gatt
Mika Gissler
Sue Jordan
Babak Khoshnood
Sonja Kiuru‐Kuhlefelt
Kari Klungsøyr
Nathalie Lelong
Renée Lutke
Olatz Mokoroa
Vera Nelen
Amanda J. Neville
Ljubica Odak
Anke Rissmann
Ieuan Scanlon
Stine Kjaer Urhoj
Diana Wellesley
Wladimir Wertelecki
Lyubov Yevtushok
Joan K. Morris
format Journal article
container_title Paediatric and Perinatal Epidemiology
container_volume 36
container_issue 6
container_start_page 792
publishDate 2022
institution Swansea University
issn 0269-5022
1365-3016
doi_str_mv 10.1111/ppe.12884
publisher Wiley
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Nursing{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Nursing
document_store_str 1
active_str 0
description BackgroundCongenital anomalies are a major cause of perinatal, neonatal and infant mortality.ObjectivesThe aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas.MethodsIn this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan–Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1–9 years of age for children born during 2005–2014 with those born during 1995–2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated.ResultsThe overall risk of death by 1 year of age for children born with any major CA in 2005–2014 decreased compared to 1995–2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9).ConclusionsSurvival of children with CAs improved for births in 2005–2014 compared with 1995–2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.
published_date 2022-06-08T04:18:59Z
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score 11.037603

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