1. Ethnicity, migrant status and the outcome of pregnancy Alison Macfarlane Department of Midwifery City University

2. 2 Interpreting routine data from local and national systems ONS mortality statistics, Series DH3 In depth analysis of ONS infant mortality linked data Fetal and Infant Death in East London Confidential Enquiries into Maternal Deaths

3. 3 Routine data from civil registration Ethnic group is not currently routinely linked to birth registration or death registration Current analyses are by mothers country of birth Fathers country of birth is also recorded but not usually analysed

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9. 9 Ethnic group differences in infant mortality No consistent association with low birthweight, or with smoking or breast feeding Marked difference between mortality of babies born to mothers from South Asian countries High mortality in babies with mothers born in Pakistan attributed to congenital anomalies High mortality in babies with mothers from West Africa and the Caribbean attributed to immaturity in groups in high rates of very low birthweight.

10. Monitoring inequalities in the outcome of pregnancy Collaboration between researchers at City University, ONS LSHTM, the universities of Oxford, Ulster and Glasgow Focus of the project was on trends and variations in inequalities in the outcome of pregnancy and about babies in their first year of life

11. 11 Based on 11,401,247 live births in England and Wales from 1983 to 2001 Focused on countries of birth that contribute to the main ethnic minority groups in England and Wales Caribbean, West Africa, East Africa, India, Pakistan, Bangladesh, Former Yugoslavia, Rest of Eastern Europe, Republic of Ireland Methods and definitions

12. 12 Percentage of live singleton births by birthweight and mothers country of birth UK Caribbean and West Africa South Asia

13. 13 Percentage of live singleton births by birthweight and mothers country of birth

14. 14 Percentage of multiple births by mothers country of birth West Africa Caribbean East Africa UK India Pakistan Bangladesh

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16. 16 Limitations Analysis excludes babies born to second and subsequent generation migrants Variables such as gestation and parity were not analysed in association with birthweight as they are either not available or provide only partial information East Africa category assumes women are mainly of Indian origin

17. Fetal and Infant Death in East London Alison Macfarlane Lisa Hilder Julia Hancock Jane Grant Michelle Lyne Kate Costeloe, Queen Mary and Homerton NHS Trust Michael Hird, Barts and the London NHS Trust

18. 18 Source: ONS, VS tables

19. 19 Fetal and infant death in East London Literature review Analysis of routine data from child health systems and other sources Case note review at Homerton and Royal London Hospitals

20. 20 Previous research in East London Variations by class Variations by mothers country of birth and ethnicity Overall infant mortality rates by ethnicity from highest to lowest: Pakistani, African and West Indian, White, Bangladeshi Due to SIDS: Pakistani, West Indian, White, Indian, Bangladeshi and African

21. 21 Previous research in East London Challenges perception that immigrants in deprived areas necessarily have poor outcomes Or represent a drain on resources Suggestion that assimilation over time may also bring poor outcomes of local white population

22. 22 Analyses of routine data Used birth notification data from the late Regional Interactive Child Health System (RICHS) All births to residents of City and Hackney, Newham and Tower Hamlets, 1999-2001 All stillbirths and infant deaths among these

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27. 27 Conclusions of review of routine data High rates of preterm and very preterm birth, especially in City and Hackney Black women have both high rates of preterm birth and the neonatal mortality for their babies is higher Stillbirth rates at term are higher and infant mortality of babies is lower for Bangladeshi women Stillbirth and infant mortality rates are high among women with no record of booking but not among those who book late

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29. 29 Further work Extending the analyses to more recent years Case control study of very preterm birth in Hackney plus nine other projects being undertaken by a range of statutory and voluntary organisations, funded by Team Hackney, the Local Strategic Partnership

30. 30 Maternal mortality Of the 166 unbooked women, 37 were of West African origin, six were Asian, and two were non-British European. There is a need for health education among women, who because of language barriers or cultural differences, may not appreciate the need for antenatal care and do not avail themselves of maternity services. Confidential Enquiry into Maternal Deaths, 1967-69

31. 31 Estimated relative risk of maternal death by ethnic group, England only 2000-02 Ethnic groupNumberRelative risk95% CI White1511.0 Black African30 * 6.74.5-9.9 Black Caribbean132.41.4-4.2 Pakistani101.20.6-2.2 All non white722.92.2-3.9 *Including 10 refugee/ asylum seeking women Source: Confidential Enquiry Into Maternal Deaths, 2000-02

32. 32 Social factors and maternal deaths Highest death rates among Black African women Raised death rates among Black Caribbean women Fourteen women who died were recent migrants Of these ten classified as refugees or asylum seekers Fifteen women who died did not speak English Nearly a fifth of those who died were single mothers 51 women had a history of domestic violence

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34. 34 Race or ethnicity What are we measuring? Racial group Ethnic or cultural origin Skin colour Immigrant or migrant status Religion Nationality National identity

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38. 38 Conclusions and questions Major differences between minority ethnic and migrant groups both in socio-demographic composition and in outcome. When comparing between groups, associations between birthweight and outcome are not straightforward. Some groups are known to be concentrated in deprived areas, but deprivation is not the only factor. For the future, we need to record both country of birth and ethnic group in order to compare outcomes for first and second generation. Data about gestational age and socio-economic status are also important.

39. 39 Challenges Bureaucratic hurdles in accessing routine data. Delays caused by Ethics Committees, Caldicott Guardians, PIAG, disclosure control and ONS Microdata Release Panel. Collaboration has become difficult because of cuts in ONS staff and relocation leading to loss of experienced staff in ONS and in the Information Centre for Health and Social Care. Poor quality of NHS data, made worse not better by National Programme for IT. Lack of funding for maternity research, apart from RCTs.