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Ethnicity Question and Antenatal Screening for Sickle Cell and

Thalassaemia [EQUANS]: Lessons for Low Prevalence Areas

Simon Dyson

Ethnic/Family Origins and Screening

Lecture 3 of 4

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EQUANS Team

Eileen Buchanan, TASC Unit, De Montfort University, Leicester.

Keith Chambers, University Hospitals of Leicester NHS Trust

Dr. Claire Chapman, University Hospitals of Leicester NHS Trust

Fiona Cochran, Royal Devon and Exeter NHS Trust

Suzy Crawford, Sickle Cell/Thalassaemia Counselling Centre, Birmingham

Dr. Lorraine Culley, Health Policy Research Unit, De Montfort University

Pam Dobson, IT Midwife, Kings College Hospitals NHS Trust

Dr. Simon Dyson, TASC Unit, De Montfort University, Leicester.

Dr. Sue Dyson, TASC Unit, De Montfort University Lucille Fifield, Sickle Cell/Thalassaemia

Counselling Centre, Leicester Sue Gawler, Laboratory Scientist, Royal Devon

and Exeter NHS Trust Cynthia Gill, Freelance Haemoglobinopathy

Specialist Worker, London Anna Fielder, TASC Unit, De Montfort University. Luqman Hayes, TASC Unit, De Montfort University Stephanie Hubbard, Faculty of Computing

Sciences, De Montfort University, Leicester Claire Jones, TASC Unit, De Montfort University Vanita Jivanji, Sickle Cell/Thalassaemia

Counselling Centre, Leicester Katherine Hooper, Health Policy Research Unit,

De Montfort University

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EQUANS Team (continued)

Ann Kennefick, West Midlands Regional Neonatal Screening Co-ordinator

Professor Mavis Kirkham, WICH, University of Sheffield

Janet Lawrence, Sickle Cell/Thalassaemia Counselling Centre, Birmingham

Matthew McCartney, TASC Unit, De Montfort University

Luriteen Miller, Sickle Cell/Thalassaemia Counselling Centre, Birmingham

Patsy Morris, Kings College Hospitals NHS Trust

Faye Sutton, Royal Devon and Exeter NHS Trust

Dr. Sukhjinder Marwah, Laboratory Scientist, City Hospital Birmingham

Dr. David Rees, Senior Lecturer, Kings College Hospitals NHS Trust

Collis Rochester-Peart, Sickle Cell/Thalassaemia Counselling Centre, SE London

Patricia Squire, University Hospitals of Leicester NHS Trust

Dr. Barbara Wild, Consultant Clinical Scientist, Kings College Hospitals NHS Trust

Maureen Williams, Sickle Cell/Thalassaemia Counselling Centre, Birmingham

Dr. Christine Wright, City Hospital Birmingham Dr. Scott Yates, TASC Unit, De Montfort

University, Leicester. Wendy Young, TASC Unit, De Montfort

University, Leicester.

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Methods

1) RCT of two ethnicity questions with 5,211 women2) 121 observations and 115 interviews with

midwives, 111 interviews with mothers3) 50 structured interviews with women completing the

ethnicity questions4) 16 in-depth taped recorded interviews with 27

specialist haemoglobinopathy counsellors who counsel carriers of sickle cell and beta-thalassaemia.

5) 330 students and 62 professionals on use of a map in determining ethnicity

DO YOU HAVE ETHNIC/FAMILY ORIGINS THAT ARE…Please tick one or more boxes to indicate these originsA. WHITE

English, Scottish, Welsh, or Irish Other North European Greek or Greek Cypriot Turkish or Turkish Cypriot Italian, Maltese, or other Mediterranean Any other White background (please write in…………….)

B. MIXED ► Please tick all boxes in sections A, C, D and E (above & below) that apply to you

C. ASIAN OR ASIAN BRITISHIndian or African-Indian Pakistani Bangladeshi Any other Asian background (please write in……….…….)

D. BLACK OR BLACK BRITISHCaribbean African Any other Black background (please write in……………….)

E. CHINESE AND OTHERChinese Japanese Malaysian, Vietnamese, or Filipino North African, Arab, or Iranian Any other (please write in…………………………………….)

Ethnicity Information Refused

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Ethnicity Question B

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?

Please tick one box only.Yes No Don't Know

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:

………………………………………………………………………………………………

………………………………………………………………………………………………

………………………………………………………………………………………………

………………………………………………………………………………………………

……………………………………………………………………………………………….

Ethnicity Information Refused

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Areas

Exeter and North Devon [Low] Leicestershire [Mixed high/low] Birmingham [High] Kings College, London [Very High]

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Recruitment Rate to Study

Total Antenatal population

Invited to participate

Midwife Participation rate

Participants

Birmingham 3,008 239 7.9%

Exeter & Devon

3,142 1,061 33.8%

Leicestershire 8,948 2,194 24.5%

Kings College 4,114 1,717 41.7%

19,546 5,211 26.7% 4,559

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Time

Exeter Birmingham Leicestershire Kings College

Mean 2.32 2.22 4.78 4.68

Mean QA 2.29 1.86 4.64 4.48

Mean QB 2.35 2.65 4.92 4.89

95th Centile 9.00 7.75 15.00 14.00

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Mixed High and Low Area

Total

Sept 2002- June 2003

Universal Screening

Total

Sept 2001-June 2002

Selective Screening

HBO Antenatal Screens

3,954 1,870

Total Bookings 9,282 9,041

Coverage of all ante-natal population

42.6% 24.5%

Ethnic Minorities

[Census Categories]

2,528 2,214

Carriers 115 87

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Antenatal Bookings: Low Prevalence

EQUANS

Sept 2002-June2003

Pre-EQUANS

Sept 2001-June2002

White 3034 3093

Mixed 22 21

Black 10 8

Indian 17 16

Far East 14 11

Middle East 7 11

Missing 38 36

Total 3142 3196

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Requests for Haemoglobinopathy Screen

During EQUANS Pre-EQUANS

HbO Screens 21 10

At risk, routine ethnic data (incl missing) 108 103

Screens as a % 19.4% 9.7%

At risk, EQUANS questions 116 n/a

Screens as a % 14.4% n/a

Missing data 183 n/a

Missing data + Risk 183 + 116 = 299 n/a

Screens/Missing data + Risk 7% n/a

Carriers (lab results) 6 3

HbS 2 1

ß-thalassaemia trait 4 2

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Mixed High and Low Area

Total

Sept 2002- June 2003

Universal Screening

Total

Sept 2001-June 2002

Selective Screening

HBO Antenatal Screens

3,954 1,870

Total Bookings 9,282 9,041

Coverage of all ante-natal population

42.6% 24.5%

Ethnic Minorities

[Census Categories]

2,528 2,214

Carriers [p = 0.045] 118 86

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Mixed High and Low Area

Pre-EQUANS During EQUANS

African/Caribbean 22 42

Asian 60 60

Other 4 16

Total 86 118

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Mixed High and Low Area

Not a product of better coverage of African, Caribbean or South Asian risk groups

Small increase in migrants from Africa increases risk overall

Better coverage of Mediterranean, Middle Eastern and Mixed categories.

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Antenatal Bookings: Low Prevalence

Trust’s Own Ethnic Categories

EQUANS

Sept 2002-June2003

Pre-EQUANS

Sept 2001-June2002

White 3034 3093

Mixed 22 21

Black 10 8

Indian 17 16

Far East 14 11

Middle East 7 11

Missing 38 36

Total 3142 3196

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Suitability of Screening Questions

Low Prevalence Area

Trust’s Ethnic Data

EQUANS Ethnicity Screening Questions

Significance

Ethnic Minority Groups At Risk

70/3142

(2.2%)

116/895

(13.0%) p < 0.001

Total Risk Ethnic Minority Groups At Risk

Plus Missing Data

108/3142

(3.4%)

133/895

(14.9%) p < 0.001

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Turning Risk Identification into Request for Testing

Selective Screening

Identified as at risk 116/895

(13.0%)

Laboratory HbO Tests as proportion of risk 14/116

(12.1%)

Identified as at risk (including missing data) 133/895

(14.9%)

Laboratory HbO Tests as proportion of risk (including missing data)

14/133

(10.5%)

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Article

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]

Presentation Ends Here