SCOOTEROER28c Sickle Cell Antenatal Screening

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Lecture series of 4 on social aspects of antenatal screening for sickle cell and thalassaemia. A fully narrated version is available on the project website SCOOTER, De Montfort University. http://www.sicklecellanaemia.org/OER/resources/scooter24-29/scooter28.html

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SCOOTEROER28c Sickle Cell Antenatal Screening

  1. 1. www.tascunit.com<br />Ethnicity Question and Antenatal Screening for Sickle Cell and Thalassaemia [EQUANS]: Lessons for Low Prevalence Areas<br />Simon Dyson<br />Ethnic/Family Origins and Screening <br />Lecture 3of 4<br />
  2. 2. www.tascunit.com<br />EQUANS Team<br />Eileen Buchanan, TASC Unit, De Montfort University, Leicester.<br />Keith Chambers, University Hospitals of Leicester NHS Trust<br />Dr. Claire Chapman, University Hospitals of Leicester NHS Trust<br />Fiona Cochran, Royal Devon and Exeter NHS Trust<br />Suzy Crawford, Sickle Cell/Thalassaemia Counselling Centre, Birmingham<br />Dr. Lorraine Culley, Health Policy Research Unit, De Montfort University<br />Pam Dobson, IT Midwife, Kings College Hospitals NHS Trust<br />Dr. Simon Dyson, TASC Unit, De Montfort University, Leicester.<br />Dr. Sue Dyson, TASC Unit, De Montfort University<br />Lucille Fifield, Sickle Cell/Thalassaemia Counselling Centre, Leicester<br />Sue Gawler, Laboratory Scientist, Royal Devon and Exeter NHS Trust<br />Cynthia Gill, Freelance Haemoglobinopathy Specialist Worker, London<br />Anna Fielder, TASC Unit, De Montfort University.<br />Luqman Hayes, TASC Unit, De Montfort University<br />Stephanie Hubbard, Faculty of Computing Sciences, De Montfort University, Leicester<br />Claire Jones, TASC Unit, De Montfort University<br />Vanita Jivanji, Sickle Cell/Thalassaemia Counselling Centre, Leicester<br />Katherine Hooper, Health Policy Research Unit, De Montfort University<br />
  3. 3. www.tascunit.com<br />EQUANS Team (continued)<br />Ann Kennefick, West Midlands Regional Neonatal Screening Co-ordinator<br />Professor Mavis Kirkham, WICH, University of Sheffield<br />Janet Lawrence, Sickle Cell/Thalassaemia Counselling Centre, Birmingham<br />Matthew McCartney, TASC Unit, De Montfort University<br />Luriteen Miller, Sickle Cell/Thalassaemia Counselling Centre, Birmingham<br />Patsy Morris, Kings College Hospitals NHS Trust<br />Faye Sutton, Royal Devon and Exeter NHS Trust<br />Dr. Sukhjinder Marwah, Laboratory Scientist, City Hospital Birmingham<br />Dr. David Rees, Senior Lecturer, Kings College Hospitals NHS Trust<br />Collis Rochester-Peart, Sickle Cell/Thalassaemia Counselling Centre, SE London <br />Patricia Squire, University Hospitals of Leicester NHS Trust<br />Dr. Barbara Wild, Consultant Clinical Scientist, Kings College Hospitals NHS Trust<br />Maureen Williams, Sickle Cell/Thalassaemia Counselling Centre, Birmingham<br />Dr. Christine Wright, City Hospital Birmingham<br />Dr. Scott Yates, TASC Unit, De Montfort University, Leicester.<br />Wendy Young, TASC Unit, De Montfort University, Leicester.<br />
  4. 4. www.tascunit.com<br />Methods<br />RCT of two ethnicity questions with 5,211 women<br />121 observations and 115 interviews with midwives, 111 interviews with mothers<br />50 structured interviews with women completing the ethnicity questions<br />16 in-depth taped recorded interviews with 27 specialist haemoglobinopathy counsellors who counsel carriers of sickle cell and beta-thalassaemia.<br />330 students and 62 professionals on use of a map in determining ethnicity<br />
  5. 5. DO YOU HAVE ETHNIC/FAMILY ORIGINS THAT ARE…<br />Please tick one or more boxes to indicate these origins<br />A. WHITE<br /> English, Scottish, Welsh, or Irish <br /> Other North European <br /> Greek or Greek Cypriot <br /> Turkish or Turkish Cypriot <br /> Italian, Maltese, or other Mediterranean <br /> Any other White background (please write in…………….) <br />B. MIXED ► Please tick all boxes in sections A, C, D and E (above & below) that apply to you<br />C. ASIAN OR ASIAN BRITISH<br /> Indian or African-Indian <br /> Pakistani <br /> Bangladeshi <br /> Any other Asian background (please write in……….…….) <br />D. BLACK OR BLACK BRITISH<br /> Caribbean <br /> African <br /> Any other Black background (please write in……………….)<br /> E. CHINESE AND OTHER<br /> Chinese <br /> Japanese <br /> Malaysian, Vietnamese, or Filipino <br /> North African, Arab, or Iranian <br /> Any other (please write in…………………………………….) <br />Ethnicity Information Refused<br />www.tascunit.com<br />
  6. 6. www.tascunit.com<br />Ethnicity Question B<br />1. Do you or any of your known ancestors, as far back as you can recall, have ethnic/family origins from areas of the world outside of the United Kingdom or Republic of Ireland? <br />Please tick one box only.<br />Yes <br />No <br />Don't Know <br />2. If Yes, then for you or for any of your known ancestors, as far back as you can recall, please write in all the countries in the spaces below:<br />………………………………………………………………………………………………<br />………………………………………………………………………………………………<br />………………………………………………………………………………………………<br />………………………………………………………………………………………………<br />……………………………………………………………………………………………….<br />Ethnicity Information Refused <br />
  7. 7. www.tascunit.com<br />Areas<br />Exeter and North Devon [Low]<br />Leicestershire [Mixed high/low]<br />Birmingham [High]<br />Kings College, London [Very High]<br />
  8. 8. www.tascunit.com<br />Recruitment Rate to Study<br />
  9. 9. www.tascunit.com<br />Time<br />
  10. 10. www.tascunit.com<br />Mixed High and Low Area<br />
  11. 11. www.tascunit.com<br />Antenatal Bookings: Low Prevalence<br />
  12. 12. www.tascunit.com<br />Requests for Haemoglobinopathy Screen<br />
  13. 13. www.tascunit.com<br />Mixed High and Low Area<br />
  14. 14. www.tascunit.com<br />Mixed High and Low Area<br />
  15. 15. www.tascunit.com<br />Mixed High and Low Area<br />Not a product of better coverage of African, Caribbean or South Asian risk groups<br />Small increase in migrants from Africa increases risk overall<br />Better coverage of Mediterranean, Middle Eastern and Mixed categories.<br />
  16. 16. www.tascunit.com<br />Antenatal Bookings: Low Prevalence<br />
  17. 17. www.tascunit.com<br />Suitability of Screening Questions<br />
  18. 18. www.tascunit.com<br />Turning Risk Identification into Request for Testing<br />
  19. 19. www.tascunit.com<br />Article<br />Dyson, SM; Chambers, K; Gawler, S; Hubbard, S; Jivanji, V; Sutton, F; and Squire, P (2007) Lessons for Intermediate and Low Prevalence Areas in England from the Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] Study. Diversity in Health and Social Care 4 (2): 123-35. [ISSN 1743-1913] <br />Presentation Ends Here<br />

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