Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality
Linking routinely collected healthcare administrative data is a valuable method for conducting research on morbidity outcomes, but linkage quality and accuracy needs to be assessed for bias as the data were not collected for research. The aim of this study was to describe the rates of linking data o...
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| Format: | Article |
| Language: | English |
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Public Library of Science (PLoS)
2023-01-01
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| Series: | PLoS ONE |
| Online Access: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468043/?tool=EBI |
| _version_ | 1797692775445037056 |
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| author | Maria Loane Joanne E. Given Joachim Tan Ingeborg Barišić Laia Barrachina-Bonet Clara Cavero-Carbonell Alessio Coi James Densem Ester Garne Mika Gissler Anna Heino Sue Jordan Renee Lutke Amanda J. Neville Ljubica Odak Aurora Puccini Michele Santoro Ieuan Scanlon Stine K. Urhoj Hermien E. K. de Walle Diana Wellesley Joan K. Morris |
| author_facet | Maria Loane Joanne E. Given Joachim Tan Ingeborg Barišić Laia Barrachina-Bonet Clara Cavero-Carbonell Alessio Coi James Densem Ester Garne Mika Gissler Anna Heino Sue Jordan Renee Lutke Amanda J. Neville Ljubica Odak Aurora Puccini Michele Santoro Ieuan Scanlon Stine K. Urhoj Hermien E. K. de Walle Diana Wellesley Joan K. Morris |
| author_sort | Maria Loane |
| collection | DOAJ |
| description | Linking routinely collected healthcare administrative data is a valuable method for conducting research on morbidity outcomes, but linkage quality and accuracy needs to be assessed for bias as the data were not collected for research. The aim of this study was to describe the rates of linking data on children with and without congenital anomalies to regional or national hospital discharge databases and to evaluate the quality of the matched data. Eleven population-based EUROCAT registries participated in a EUROlinkCAT study linking data on children with a congenital anomaly and children without congenital anomalies (reference children) born between 1995 and 2014 to administrative databases including hospital discharge records. Odds ratios (OR), adjusted by region, were estimated to assess the association of maternal and child characteristics on the likelihood of being matched. Data on 102,654 children with congenital anomalies were extracted from 11 EUROCAT registries and 2,199,379 reference children from birth registers in seven regions. Overall, 97% of children with congenital anomalies and 95% of reference children were successfully matched to administrative databases. Information on maternal age, multiple birth status, sex, gestational age and birthweight were >95% complete in the linked datasets for most regions. Compared with children born at term, those born at ≤27 weeks and 28–31 weeks were less likely to be matched (adjusted OR 0.23, 95% CI 0.21–0.25 and adjusted OR 0.75, 95% CI 0.70–0.81 respectively). For children born 32–36 weeks, those with congenital anomalies were less likely to be matched (adjusted OR 0.78, 95% CI 0.71–0.85) while reference children were more likely to be matched (adjusted OR 1.28, 95% CI 1.24–1.32). Children born to teenage mothers and mothers ≥35 years were less likely to be matched compared with mothers aged 20–34 years (adjusted ORs 0.92, 95% CI 0.88–0.96; and 0.87, 95% CI 0.86–0.89 respectively). The accuracy of linkage and the quality of the matched data suggest that these data are suitable for researching morbidity outcomes in most regions/countries. However, children born preterm and those born to mothers aged <20 and ≥35 years are less likely to be matched. While linkage to administrative databases enables identification of a reference group and long-term outcomes to be investigated, efforts are needed to improve linkages to population groups that are less likely to be linked. |
| first_indexed | 2024-03-12T02:32:29Z |
| format | Article |
| id | doaj.art-0bbc4a11707648b48a8b2f413f4073a6 |
| institution | Directory Open Access Journal |
| issn | 1932-6203 |
| language | English |
| last_indexed | 2024-03-12T02:32:29Z |
| publishDate | 2023-01-01 |
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| series | PLoS ONE |
| spelling | doaj.art-0bbc4a11707648b48a8b2f413f4073a62023-09-05T05:31:46ZengPublic Library of Science (PLoS)PLoS ONE1932-62032023-01-01188Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data qualityMaria LoaneJoanne E. GivenJoachim TanIngeborg BarišićLaia Barrachina-BonetClara Cavero-CarbonellAlessio CoiJames DensemEster GarneMika GisslerAnna HeinoSue JordanRenee LutkeAmanda J. NevilleLjubica OdakAurora PucciniMichele SantoroIeuan ScanlonStine K. UrhojHermien E. K. de WalleDiana WellesleyJoan K. MorrisLinking routinely collected healthcare administrative data is a valuable method for conducting research on morbidity outcomes, but linkage quality and accuracy needs to be assessed for bias as the data were not collected for research. The aim of this study was to describe the rates of linking data on children with and without congenital anomalies to regional or national hospital discharge databases and to evaluate the quality of the matched data. Eleven population-based EUROCAT registries participated in a EUROlinkCAT study linking data on children with a congenital anomaly and children without congenital anomalies (reference children) born between 1995 and 2014 to administrative databases including hospital discharge records. Odds ratios (OR), adjusted by region, were estimated to assess the association of maternal and child characteristics on the likelihood of being matched. Data on 102,654 children with congenital anomalies were extracted from 11 EUROCAT registries and 2,199,379 reference children from birth registers in seven regions. Overall, 97% of children with congenital anomalies and 95% of reference children were successfully matched to administrative databases. Information on maternal age, multiple birth status, sex, gestational age and birthweight were >95% complete in the linked datasets for most regions. Compared with children born at term, those born at ≤27 weeks and 28–31 weeks were less likely to be matched (adjusted OR 0.23, 95% CI 0.21–0.25 and adjusted OR 0.75, 95% CI 0.70–0.81 respectively). For children born 32–36 weeks, those with congenital anomalies were less likely to be matched (adjusted OR 0.78, 95% CI 0.71–0.85) while reference children were more likely to be matched (adjusted OR 1.28, 95% CI 1.24–1.32). Children born to teenage mothers and mothers ≥35 years were less likely to be matched compared with mothers aged 20–34 years (adjusted ORs 0.92, 95% CI 0.88–0.96; and 0.87, 95% CI 0.86–0.89 respectively). The accuracy of linkage and the quality of the matched data suggest that these data are suitable for researching morbidity outcomes in most regions/countries. However, children born preterm and those born to mothers aged <20 and ≥35 years are less likely to be matched. While linkage to administrative databases enables identification of a reference group and long-term outcomes to be investigated, efforts are needed to improve linkages to population groups that are less likely to be linked.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468043/?tool=EBI |
| spellingShingle | Maria Loane Joanne E. Given Joachim Tan Ingeborg Barišić Laia Barrachina-Bonet Clara Cavero-Carbonell Alessio Coi James Densem Ester Garne Mika Gissler Anna Heino Sue Jordan Renee Lutke Amanda J. Neville Ljubica Odak Aurora Puccini Michele Santoro Ieuan Scanlon Stine K. Urhoj Hermien E. K. de Walle Diana Wellesley Joan K. Morris Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality PLoS ONE |
| title | Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality |
| title_full | Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality |
| title_fullStr | Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality |
| title_full_unstemmed | Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality |
| title_short | Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality |
| title_sort | creating a population based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 european regions assessment of linkage success and data quality |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468043/?tool=EBI |
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