Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study

EUROCAT is a European network of population-based congenital anomaly (CA) registries. Twenty-one registries agreed to participate in the EUROlinkCAT study to determine if reliable information on the survival of children born with a major CA between 1995 and 2014 can be obtained through linkage to national vital statistics or mortality records. Live birth children with a CA could be linked using personal identifiers to either their national vital statistics (including birth records, death records, hospital records) or to mortality records only, depending on the data available within each region. In total, 18 of 21 registries with data on 192,862 children born with congenital anomalies participated in the study. One registry was unable to get ethical approval to participate and linkage was not possible for two registries due to local reasons. Eleven registries linked to vital statistics and seven registries linked to mortality records only; one of the latter only had identification numbers for 78% of cases, hence it was excluded from further analysis. For registries linking to vital statistics: six linked over 95% of their cases for all years and five were unable to link at least 85% of all live born CA children in the earlier years of the study. No estimate of linkage success could be calculated for registries linking to mortality records. Irrespective of linkage method, deaths that occurred during the first week of life were over three times less likely to be linked compared to deaths occurring after the first week of life. Linkage to vital statistics can provide accurate estimates of survival of children with CAs in some European countries. Bias arises when linkage is not successful, as early neonatal deaths were less likely to be linked. Linkage to mortality records only cannot be recommended, as linkage quality, and hence bias, cannot be assessed.

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Population-Based Estimation of the Preterm Birth Rate in Lilongwe, Malawi: Making Every Birth Count

American Journal of Perinatology Reports ◽

10.1055/s-0040-1708491 ◽

2020 ◽

Vol 10 (01) ◽

pp. e78-e86

Author(s):

Kathleen M. Antony ◽

Peter N. Kazembe ◽

Ryan M. Pace ◽

Judy Levison ◽

Henry Phiri ◽

...

Keyword(s):

Risk Factors ◽

Preterm Birth ◽

Birth Rate ◽

Health Workers ◽

Population Based ◽

High Rate ◽

Comorbid Conditions ◽

Neonatal Deaths ◽

Preterm Birth Rate ◽

Early Neonatal Deaths

Abstract Objective The objective of this study was to perform a population-based estimation of the preterm birth (PTB) rate in regions surrounding Lilongwe, Malawi. Study Design We partnered with obstetrician specialists, community health workers, local midwives, and clinicians in a 50 km region surrounding Lilongwe, Malawi, to perform a population-based estimation of the PTB rate during the study period from December 1, 2012 to May 19, 2015. Results Of the 14,792 births captured, 19.3% of births were preterm, including preterm early neonatal deaths. Additional PTB risk factors were similarly prevalent including domestic violence, HIV, malaria, anemia, and malnutrition. Conclusion When performing a population-based estimation of the rate of PTB, including women without antenatal care and women delivering at home, the 19.3% rate of PTB is among the highest recorded globally. This is accompanied by a high rate of risk factors and comorbid conditions.

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Assessing the deprivation gap in stillbirths and neonatal deaths by cause of death: a national population-based study

Archives of Disease in Childhood - Fetal and Neonatal Edition ◽

10.1136/archdischild-2018-316124 ◽

2019 ◽

Vol 104 (6) ◽

pp. F624-F630 ◽

Cited By ~ 2

Author(s):

Kate E Best ◽

Sarah E Seaton ◽

Elizabeth S Draper ◽

David J Field ◽

Jennifer J Kurinczuk ◽

...

Keyword(s):

Congenital Anomalies ◽

Neonatal Death ◽

National Level ◽

Mortality Rates ◽

Population Based ◽

Intervention Strategies ◽

Population Based Study ◽

Neonatal Deaths ◽

The Uk ◽

Deprived Areas

ObjectiveTo investigate socioeconomic inequalities in cause-specific stillbirth and neonatal mortality to identify key areas of focus for future intervention strategies to achieve government ambitions to reduce mortality rates.DesignRetrospective cohort study.SettingEngland, Wales, Scotland and the UK Crown Dependencies.ParticipantsAll singleton births between 1 January 2014 and 31 December 2015 at ≥24 weeks’ gestation.Main outcome measureCause-specific stillbirth or neonatal death (0–27 days after birth) per 10 000 births by deprivation quintile.ResultsData on 5694 stillbirths (38.1 per 10 000 total births) and 2368 neonatal deaths (15.9 per 10 000 live births) were obtained from Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK). Women from the most deprived areas were 1.68 (95% CI 1.56 to 1.81) times more likely to experience a stillbirth and 1.67 (95% CI 1.48 to 1.87) times more likely to experience a neonatal death than those from the least deprived areas, equating to an excess of 690 stillbirths and 231 neonatal deaths per year associated with deprivation. Small for gestational age (SGA) unexplained antepartum stillbirth was the greatest contributor to excess stillbirths accounting for 33% of the deprivation gap in stillbirths. Congenital anomalies accounted for the majority (59%) of the deprivation gap in neonatal deaths, followed by preterm birth not SGA (24–27 weeks, 27%).ConclusionsCause-specific mortality rates at a national level allow identification of key areas of focus for future intervention strategies to reduce mortality. Despite a reduction in the deprivation gap for stillbirths and neonatal deaths, public health interventions should primarily focus on socioeconomic determinants of SGA stillbirth and congenital anomalies.

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Qualitative assessment of patient-provider communication and provider reporting on misclassification of stillbirths and early neonatal deaths in Ethiopia

Minerva Ginecologica ◽

10.23736/s0026-4784.20.04549-9 ◽

2020 ◽

Vol 72 (3) ◽

Author(s):

Andreea A. Creanga ◽

Madeline Woo ◽

Abiy Seifu Estifanos ◽

Hanna Feleke ◽

Dorka Woldesenbet ◽

...

Keyword(s):

Qualitative Assessment ◽

Provider Communication ◽

Neonatal Deaths ◽

Patient Provider Communication ◽

Early Neonatal Deaths

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Faculty Opinions recommendation of Perinatal mortality and congenital anomalies in babies of women with type 1 or type 2 diabetes in England, Wales, and Northern Ireland: population based study.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.30572.487074 ◽

2006 ◽

Author(s):

Michael Maresh

Keyword(s):

Type 2 Diabetes ◽

Northern Ireland ◽

Perinatal Mortality ◽

Congenital Anomalies ◽

Population Based ◽

Population Based Study

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Stillbirth outcome capture and classification in population-based surveys: EN-INDEPTH study

Population Health Metrics ◽

10.1186/s12963-020-00239-8 ◽

2021 ◽

Vol 19 (S1) ◽

Cited By ~ 4

Author(s):

Hannah Blencowe ◽

◽

Matteo Bottecchia ◽

Doris Kwesiga ◽

Joseph Akuze ◽

...

Keyword(s):

Gestational Age ◽

A Priori ◽

Healthcare Providers ◽

Population Based ◽

Reproductive Age ◽

Group Discussions ◽

Cross Sectional ◽

Vital Status ◽

Neonatal Deaths ◽

Adverse Pregnancy

Abstract Background Household surveys remain important sources of stillbirth data, but omission and misclassification are common. Classifying adverse pregnancy outcomes as stillbirths requires accurate reporting of vital status at birth and gestational age or birthweight for every pregnancy. Further categorisation, e.g. by sex, or timing (intrapartum/antepartum) improves data to understand and prevent stillbirth. Methods We undertook a cross-sectional population-based survey of women of reproductive age in five health and demographic surveillance system sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda (2017–2018). All women answered a full birth history with pregnancy loss questions (FBH+) or a full pregnancy history (FPH). A sub-sample across both groups were asked additional stillbirth questions. Questions were evaluated using descriptive measures. Using an interpretative paradigm and phenomenology methodology, focus group discussions with women exploring barriers to reporting birthweight for stillbirths were conducted. Thematic analysis was guided by an a priori codebook. Results Overall 69,176 women reported 98,483 livebirths (FBH+) and 102,873 pregnancies (FPH). Additional questions were asked for 1453 stillbirths, 1528 neonatal deaths and 12,620 surviving children born in the 5 years prior to the survey. Completeness was high (> 99%) for existing FBH+/FPH questions on signs of life at birth and gestational age (months). Discordant responses in signs of life at birth between different questions were common; nearly one-quarter classified as stillbirths on FBH+/FPH were reported born alive on additional questions. Availability of information on gestational age (weeks) (58.1%) and birthweight (13.2%) was low amongst stillbirths, and heaping was common. Most women (93.9%) were able to report the sex of their stillborn baby. Response completeness for stillbirth timing (18.3–95.1%) and estimated proportion intrapartum (15.6–90.0%) varied by question and site. Congenital malformations were reported in 3.1% stillbirths. Perceived value in weighing a stillborn baby varied and barriers to weighing at birth a nd knowing birthweight were common. Conclusions Improving stillbirth data in surveys will require investment in improving the measurement of vital status, gestational age and birthweight by healthcare providers, communication of these with women, and overcoming reporting barriers. Given the large burden and effect on families, improved data must be made available to end preventable stillbirths.

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Epidemiology of systemic sclerosis: a multi-database population-based study in Tuscany (Italy)

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-021-01733-4 ◽

2021 ◽

Vol 16 (1) ◽

Author(s):

Alessio Coi ◽

◽

Simone Barsotti ◽

Michele Santoro ◽

Fabio Almerigogna ◽

...

Keyword(s):

Systemic Sclerosis ◽

Rare Diseases ◽

Severe Disease ◽

Pulmonary Involvement ◽

Population Based ◽

Vital Statistics ◽

Drug Prescriptions ◽

Malignant Neoplasms ◽

Lower Survival ◽

Treatment And Prevention

Abstract Background Systemic Sclerosis (SSc) is a chronic autoimmune disease with a complex pathogenesis that includes vascular injury, abnormal immune activation, and tissue fibrosis. We provided a complete epidemiological characterization of SSc in the Tuscany region (Italy), considering prevalence and incidence, survival, comorbidities and drug prescriptions, by using a multi-database population-based approach. Cases of SSc diagnosed between 1st January 2003 and 31st December 2017 among residents in Tuscany were collected from the population-based Rare Diseases Registry of Tuscany. All cases were linked to regional health and demographic databases to obtain information about vital statistics, principal causes of hospitalization, complications and comorbidities, and drug prescriptions. Results The prevalence of SSc in Tuscany population resulted to be 22.2 per 100,000, with the highest prevalence observed for the cases aged ≥ 65 years (33.2 per 100,000, CI 95% 29.6–37.3). In females, SSc was predominant (86.7% on the total) with an overall sex ratio F/M of 6.5. Nevertheless, males presented a more severe disease, with a lower survival and significant differences in respiratory complications and metabolic comorbidities. Complications and comorbidities such as pulmonary involvement (HR = 1.66, CI 95% 1.17–2.35), congestive heart failure (HR = 2.76, CI 95% 1.80–4.25), subarachnoid and intracerebral haemorrhage (HR = 2.33, CI 95% 1.21–4.48) and malignant neoplasms (HR = 1.63, CI 95% 1.06–2.52), were significantly associated to a lower survival, also after adjustment for age, sex and other SSc-related complications. Disease-modifying antirheumatic drugs, endothelin receptor antagonists, and phosphodiesterase-5 inhibitors were the drugs with the more increasing prevalence of use in the 2008–2017 period. Conclusions The multi-database approach is important in the investigation of rare diseases where it is often difficult to provide accurate epidemiological indicators. A population-based registry can be exploited in synergy with health databases, to provide evidence related to disease outcomes and therapies and to assess the burden of disease, relying on a large cohort of cases. Building an integrated archive of data from multiple databases linking a cohort of patients to their comorbidities, clinical outcomes and survival, is important both in terms of treatment and prevention.

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Validity of an algorithm to identify cardiovascular deaths from administrative health records: a multi-database population-based cohort study

BMC Health Services Research ◽

10.1186/s12913-021-06762-0 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Lisa M. Lix ◽

Shamsia Sobhan ◽

Audray St-Jean ◽

Jean-Marc Daigle ◽

Anat Fisher ◽

...

Keyword(s):

Cohort Study ◽

Cardiovascular Mortality ◽

Population Based ◽

Vital Statistics ◽

Practice Research ◽

Clinical Practice Research Datalink ◽

Health Records ◽

Predictive Values ◽

Site Specific ◽

Hospital Deaths

Abstract Background Cardiovascular death is a common outcome in population-based studies about new healthcare interventions or treatments, such as new prescription medications. Vital statistics registration systems are often the preferred source of information about cause-specific mortality because they capture verified information about the deceased, but they may not always be accessible for linkage with other sources of population-based data. We assessed the validity of an algorithm applied to administrative health records for identifying cardiovascular deaths in population-based data. Methods Administrative health records were from an existing multi-database cohort study about sodium-glucose cotransporter-2 (SGLT2) inhibitors, a new class of antidiabetic medications. Data were from 2013 to 2018 for five Canadian provinces (Alberta, British Columbia, Manitoba, Ontario, Quebec) and the United Kingdom (UK) Clinical Practice Research Datalink (CPRD). The cardiovascular mortality algorithm was based on in-hospital cardiovascular deaths identified from diagnosis codes and select out-of-hospital deaths. Sensitivity, specificity, and positive and negative predictive values (PPV, NPV) were calculated for the cardiovascular mortality algorithm using vital statistics registrations as the reference standard. Overall and stratified estimates and 95% confidence intervals (CIs) were computed; the latter were produced by site, location of death, sex, and age. Results The cohort included 20,607 individuals (58.3% male; 77.2% ≥70 years). When compared to vital statistics registrations, the cardiovascular mortality algorithm had overall sensitivity of 64.8% (95% CI 63.6, 66.0); site-specific estimates ranged from 54.8 to 87.3%. Overall specificity was 74.9% (95% CI 74.1, 75.6) and overall PPV was 54.5% (95% CI 53.7, 55.3), while site-specific PPV ranged from 33.9 to 72.8%. The cardiovascular mortality algorithm had sensitivity of 57.1% (95% CI 55.4, 58.8) for in-hospital deaths and 72.3% (95% CI 70.8, 73.9) for out-of-hospital deaths; specificity was 88.8% (95% CI 88.1, 89.5) for in-hospital deaths and 58.5% (95% CI 57.3, 59.7) for out-of-hospital deaths. Conclusions A cardiovascular mortality algorithm applied to administrative health records had moderate validity when compared to vital statistics data. Substantial variation existed across study sites representing different geographic locations and two healthcare systems. These variations may reflect different diagnostic coding practices and healthcare utilization patterns.

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OC-073 Risks of Major Congenital Anomalies in Children Born to Women with Inflammatory Bowel Disease: a United Kingdom Population-Based Cohort Study

Gut ◽

10.1136/gutjnl-2013-304907.072 ◽

2013 ◽

Vol 62 (Suppl 1) ◽

pp. A31.2-A32

Author(s):

L Ban ◽

L J Tata ◽

T Card

Keyword(s):

Inflammatory Bowel Disease ◽

Cohort Study ◽

United Kingdom ◽

Bowel Disease ◽

Congenital Anomalies ◽

Population Based ◽

United Kingdom Population ◽

Inflammatory Bowel

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Preterm labour in multiple pregnancies

Fetal and Maternal Medicine Review ◽

10.1017/s0965539500000784 ◽

1993 ◽

Vol 5 (2) ◽

pp. 105-119 ◽

Cited By ~ 2

Author(s):

James P Neilson ◽

Caroline A Crowther

Keyword(s):

Perinatal Mortality ◽

Preterm Labour ◽

Multiple Pregnancy ◽

High Rate ◽

Fetal Malformation ◽

Multiple Pregnancies ◽

Neonatal Deaths ◽

Late Abortion ◽

Early Neonatal Deaths ◽

Singleton Pregnancies

Multiple pregnancy is associated with a high rate of perinatal loss – mainly due to preterm labour but with important contributions from fetal malformation, intrauterine growth retardation and twin-twin transfusion syndrome. The overall perinatal mortality rate is consistently around six times that of singleton pregnancies but the rate rises progressively with the number of fetuses. Rates of 63,164,200,214 and 416 per 1000 births have been recently reported for twins, triplets, quadruplets, quintuplets and sextuplets respectively. In addition to these alarming figures, it should be emphasized that the restricted concept of perinatal mortality obscures the real extent of loss. If we include late abortion (after 20 weeks), late neonatal deaths and deaths in infancy from perinatal causes, as well as the usual indices of perinatal mortality (stillbirths and early neonatal deaths) we find that the total loss rate from twin pregnancy alone doubles and may be close to 10%. Although the rate of loss from multiple pregnancies is now substantially higher than that associated with the pregnancies of diabetic women, the challenge of multiple pregnancy has not been met with the same commitment or organisation of specialized perinatal services as has diabetes.

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