Phenotyping congenital anomalies in administrative hospital records

Zylbersztejn, Ania; Verfürden, Maximiliane L; Hardelid, Pia; Gilbert, Ruth; Wijlaars, Linda

doi:10.1111/ppe.12627

Cited by 9 publications

(12 citation statements)

References 17 publications

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“…gestational age, sex, maternal age and area-level deprivation, comparable with information recorded in birth registers in the Nordic countries, Scotland, Canada and Australia, although improvements to data completeness are needed. Diagnoses are coded using ICD-10 classification, which is also used in hospital records in Europe, New Zealand, Australia and Canada [18], enabling international comparisons of child health outcomes (such as mortality, congenital anomalies, chronic conditions or respiratory tract infections) [4,5,8,10,53].…”

Section: Plos Onementioning

confidence: 99%

“…Whole-country coverage minimises selection bias and loss to follow-up [1], and enables developing "natural experiments" to assess the impact of policy changes and public health interventions on population health [2,3]. Large sample size enables studying rare outcomes, such as child mortality or congenital anomalies [4,5]. Further, secondary use of routinely collected data reduces study costs and time compared to de novo data collection.…”

Section: Introductionmentioning

confidence: 99%

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Developing a national birth cohort for child health research using a hospital admissions database in England: The impact of changes to data collection practices

2020

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Background National birth cohorts derived from administrative health databases constitute unique resources for child health research due to whole country coverage, ongoing follow-up and linkage to other data sources. In England, a national birth cohort can be developed using Hospital Episode Statistics (HES), an administrative database covering details of all publicly funded hospital activity, including 97% of births, with longitudinal follow-up via linkage to hospital and mortality records. We present methods for developing a national birth cohort using HES and assess the impact of changes to data collection over time on coverage and completeness of linked follow-up records for children. Methods We developed a national cohort of singleton live births in 1998–2015, with information on key risk factors at birth (birth weight, gestational age, maternal age, ethnicity, area-level deprivation). We identified three changes to data collection, which could affect linkage of births to follow-up records: (1) the introduction of the “NHS Numbers for Babies (NN4B)”, an on-line system which enabled maternity staff to request a unique healthcare patient identifier (NHS number) immediately at birth rather than at civil registration, in Q4 2002; (2) the introduction of additional data quality checks at civil registration in Q3 2009; and (3) correcting a postcode extraction error for births by the data provider in Q2 2013. We evaluated the impact of these changes on trends in two outcomes in infancy: hospital readmissions after birth (using interrupted time series analyses) and mortality rates (compared to published national statistics). Results The cohort covered 10,653,998 babies, accounting for 96% of singleton live births in England in 1998–2015. Overall, 2,077,929 infants (19.5%) had at least one hospital readmission after birth. Readmission rates declined by 0.2% percentage points per annual quarter in Q1 1998 to Q3 2002, shifted up by 6.1% percentage points (compared to the expected value based on the trend before Q4 2002) to 17.7% in Q4 2002 when NN4B was introduced, and increased by 0.1% percentage points per annual quarter thereafter. Infant mortality rates were under-reported by 16% for births in 1998–2002 and similar to published national mortality statistics for births in 2003–2015. The trends in infant readmission were not affected by changes to data collection practices in Q3 2009 and Q2 2013, but the proportion of unlinked mortality records in HES and in ONS further declined after 2009. Discussion HES can be used to develop a national birth cohort for child health research with follow-up via linkage to hospital and mortality records for children born from 2003 onwards. Re-linking births before 2003 to their follow-up records would maximise potential benefits of this rich resource, enabling studies of outcomes in adolescents with over 20 years of follow-up.

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Section: Plos Onementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Developing a national birth cohort for child health research using a hospital admissions database in England: The impact of changes to data collection practices

2020

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“…77 The prevalence of CMs was shown to depend markedly on the code-list applied, ranging from 1.8% to 4.1%. 77…”

Section: Discussionmentioning

confidence: 98%

“…The influence of the codes used is also pertinent to studies of secondary care data. A very recent study, published after we completed the search for this review, identified CMs in UK hospitalisation data using three different ICD‐10 code‐lists 77 . The prevalence of CMs was shown to depend markedly on the code‐list applied, ranging from 1.8% to 4.1% 77 …”

Section: Discussionmentioning

confidence: 99%

The identification and validity of congenital malformation diagnoses in UK electronic health records: A systematic review

Peppa

Minassian

Mangtani

et al. 2021

Pharmacoepidemiology and Drug

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Purpose: To describe the methods used to identify and validate congenital malformation diagnoses recorded in UK electronic health records, and the results of validation studies.Methods: Medline and Embase were searched for publications between 1987 and 2019 that involved identifying congenital malformations from UK electronic health records using diagnostic codes. The methods and code-lists used to identify congenital malformations, and the methods and results of validations, were examined.Results: We retrieved 54 eligible studies; 36 identified congenital malformations from primary care data and 18 from secondary care data alone or in combination with birth and/or death records. Identification in secondary care data relied on codes from the 'Q' chapter for congenital malformations in ICD-10. In contrast, studies using primary care data frequently used additional codes outside of the 'P' chapter for congenital malformation diagnoses in Read, although the exact codes used were not always clear. Eight studies validated diagnoses identified in primary care data. The positive predictive value was highest (80%-100%) for congenital malformations overall, major malformations, and heart defects although the validity of the reference standard used was often uncertain. It was lowest for neural tube defects (71%) and developmental hip dysplasia (56%).Conclusions: Studies identifying congenital malformations from primary care data provided limited details about the methods used. The few validation studies were limited to diagnoses recorded in primary care. Further assessments of all measures of validity in both data sources and of other malformation subgroups are needed, using robust reference standards and adhering to reporting guidelines.

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“…Cases were classified as isolated or complex depending on the presence of additional congenital anomaly diagnoses recorded in hospital or death records during infancy (online supplemental table 4). 20 Codes related to anorectal conditions were excluded from this classification.…”

Section: Methodsmentioning

confidence: 99%

Birth prevalence of anorectal malformations in England and 5-year survival: a national birth cohort study

et al. 2022

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ObjectiveTo determine the birth prevalence, maternal risk factors and 5-year survival for isolated and complex anorectal malformations.DesignNational birth cohort using hospital admission data and death records.SettingAll National Health Service England hospitals.PatientsLive-born singletons delivered from 2002 through 2018, with evidence in the first year of life of a diagnosis of an anorectal malformation and repair during a hospital admission, or anorectal malformation recorded on the death certificate. Cases were further classified as isolated or complex depending on the presence of additional anomalies.Main outcome measuresBirth prevalence of anorectal malformations per 10 000 live births, risk ratios for isolated and complex anorectal malformation by maternal, infant and birth characteristics, and 5-year survival.ResultsWe identified 3325 infants with anorectal malformations among 9 474 147 live-born singletons; 61.7% (n=2050) of cases were complex. Birth prevalence was 3.5 per 10 000 live births (95% CI 3.4 to 3.6). Complex anorectal malformations were associated with maternal age extremes after accounting for other sociodemographic factors. Compared with maternal ages 25–34 years, the risk of complex anorectal malformations was 31% higher for ≥35 years (95% CI 17 to 48) and 13% higher for ≤24 years (95% CI 0 to 27). Among 2376 anorectal malformation cases (n=1450 complex) born from 2002 through 2014, 5-year survival was lower for complex (86.9%; 95% CI 85.1% to 88.5%) than isolated anorectal malformations (98.2%; 95% CI 97.1% to 98.9%). Preterm infants with complex anorectal malformations had the lowest survival (73.4%; 95% CI 68.1% to 78.0%).ConclusionsDifferences in maternal risk factors for isolated and complex anorectal malformations may reflect different underlying mechanisms for occurrence. Five-year survival is high but lowest for preterm children with complex anorectal malformations.

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Phenotyping congenital anomalies in administrative hospital records

Cited by 9 publications

References 17 publications

Developing a national birth cohort for child health research using a hospital admissions database in England: The impact of changes to data collection practices

Developing a national birth cohort for child health research using a hospital admissions database in England: The impact of changes to data collection practices

The identification and validity of congenital malformation diagnoses in UK electronic health records: A systematic review

Birth prevalence of anorectal malformations in England and 5-year survival: a national birth cohort study

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