Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: a randomized controlled trial of two questionnaires

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dc.contributor.author Dyson, Simon
dc.contributor.author Culley, Lorraine
dc.contributor.author Gill, Cynthia
dc.contributor.author Hubbard, Stephanie
dc.contributor.author Kennefick, Ann
dc.contributor.author Morris, Patsy
dc.contributor.author Rees, David
dc.contributor.author Sutton, Faye
dc.contributor.author Squire, Patricia
dc.date.accessioned 2008-06-20T13:13:49Z
dc.date.available 2008-06-20T13:13:49Z
dc.date.issued 2006
dc.identifier.citation Dyson, Simon [et al.] (2006) Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: a randomized controlled trial of two questionnaires. Ethnicity and health, 11 (2), pp.169-189. en
dc.identifier.issn 1355-7858
dc.identifier.issn 1465-3419
dc.identifier.uri http://hdl.handle.net/2086/118
dc.description A policy summary of these and related papers has been reproduced in: • The Sickle Cell Disease Information Center, Georgia, USA. • The Sickle Cell Disease Association of America, Baltimore, MD, USA • Athens Institute for Education and Research • London IDEAS Genetics Knowledge Park • Making Research Count: University of Warwick
dc.description.abstract Abstract Concepts allied to ethnicity are increasingly coming under question as legitimate variables for use in health research. A randomised controlled trial of two ethnicity screening questions for ascertaining risk of carrying genes associated with sickle cell and thalassaemia illustrates the challenges and limitations of assessing an association of social constructs and genetic statuses. Objectives To evaluate two candidate ethnicity screening questions in ante-natal screening programmes in low, mixed and high sickle cell prevalence areas, and to identify time taken in administration of the questions by use of the following measures: (1) Proportions of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview. (2) Numbers of carriers of clinically significant haemoglobin disorders missed by ethnicity screening questions, (3) Time taken to explain screening question for SCD/thalassaemia and obtain ethnic/family origins. (4) Proportion of clients providing usable ethnic/family origins data (5) Reported ethnic/family origins in pregnant women at first booking with midwife. Design Ten month (Sept 2002-June 2003) questionnaire study with random allocation to two self-administered ethnicity questions, comparison with laboratory results and results from re-interview. The settings were ante-natal booking clinics in four geographical areas of England of varying expected foetal prevalence of sickle cell disease (SCD): very high (29.75 per 10,000 pregnancies); high (8.2); mixed high and low (1.29) and low (0.18). The subjects were 4,559 pregnant women at first booking with midwife. Results Proportion of respondents with missing ethnicity data and/or significant changes in ethnic/family origins upon re-interview were 4.33% (CI 2.63%-6.68%) for a category-based question and 9.45% (CI 6.86%-12.61%) for a binary plus open-ended question. Proportions of carriers missed were 5.74% (CI 2.34%-11.46%) and 9.71% (CI 4.75%-17.13%) by category-based and binary plus open-ended questions respectively. Average time taken averaged to ascertain ethnic/family origins for screening was between 2.17 and 5.12 minutes in different areas, and up to 15 minutes at the 95th Centile. Usable ethnicity screening data was missing in 2.94% of instances. Errors in interpretation or missing data were 3.2% for a category-based question, and 4.71% for a binary plus open-ended ethnicity question. Ethnicity Question A produces fewer cases of missing or misinterpreted data (p<0.001). Conclusions A category-based ethnicity screening question was more effective than a binary plus open-ended question. Using the more effective question, 5.74% (CI 2.34%-11.46%) of significant haemoglobinopathies will be missed in a selective screening programme, and 4.33% (CI 2.63-6.68%) of replies to an ethnicity screening question will be unreliable when compared to information given upon re-interview. In specific carefully circumscribed situations, namely, in ante-natal screening for sickle cell and thalassaemia, it is possible to measure the degree of association between social constructs of ethnicity and health status in a manner that may help in effecting policy decisions. en
dc.description.sponsorship The NHS Sickle Cell and Thalassaemia Screening Programme, Department of Health and the Unit for the Social Study of Thalassaemia and Sickle Cell en
dc.language.iso en en
dc.publisher Taylor and Francis en
dc.subject ethnicity en
dc.subject screening en
dc.subject sickle cell en
dc.subject thalassaemia en
dc.subject ante-natal en
dc.subject randomized controlled trial en
dc.subject family origins en
dc.subject race en
dc.subject RAE 2008
dc.subject UoA 11 Nursing and Midwifery
dc.title Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: a randomized controlled trial of two questionnaires en
dc.title.alternative Ethnic question and screening for sickle cell, RCT en
dc.type Article en
dc.identifier.doi http://dx.doi.org/10.1080/13557850500460348
dc.researchgroup Unit for the Social Study of Thalassaemia and Sickle Cell
dc.researchgroup Reproduction Research Group
dc.researchgroup Mary Seacole Research Centre
dc.researchgroup Health Policy Research Unit


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