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The feasibility of using ethnicity as a primary tool for antenatal selective screening for sickle cell disorders:
Peter J Aspinall1, Simon M Dyson, Elizabeth N Anionwu
1Centre for Health Services Studies, University of Kent at Canterbury, Oak Lodge, David Salomons Estate, Broomhill Road, Tunbridge Wells, Kent TN3 0TG, UK. peter.aspinall@hhc.umds.ac.uk
Insights
Developing effective ethnicity questions is crucial for the UK
Area of Science:
- Public Health
- Genetics
- Screening Programmes
Background:
- The UK National Health Service plans linked antenatal and neonatal screening for haemoglobinopathies.
- Standardised ethnicity data collection is vital for effective screening programmes.
- Current ethnicity data collection shows significant variability and misclassification risks.
Purpose of the Study:
- To evaluate the effectiveness of ethnicity questions for haemoglobinopathy screening.
- To review evidence on ethnicity data collection for antenatal and neonatal screening.
- To propose an optimal ethnicity screening question format for haemoglobinopathies.
Main Methods:
- Literature review on ethnicity data collection methods and question design.
- Analysis of evidence on the use of ethnicity as a primary screening tool.
- Evaluation of different ethnicity question formats, including census data and 'family origins'.
Main Results:
- Substantial variability exists in current ethnicity data collection practices.
- Risk group misclassification rates can be as high as 20%, exceeding targets.
- No single ethnicity question format is universally optimal.
Conclusions:
- Standardised ethnicity data is essential for accurate haemoglobinopathy screening.
- Further research and testing are needed to refine ethnicity screening questions.
- Developing and implementing an effective ethnicity question is key to the national screening programme.
Abstract:
The Department of Health has announced a linked antenatal and neonatal screening programme for haemoglobinopathies by 2004 in a comprehensive national plan for the National Health Service in Britain. In response the National Screening Committee has commenced development work on how such a programme can best be implemented, including investigation of the effectiveness of a question about ethnic origin as a basis for selection. In addition, two recent health technology assessment reports have assessed alternative options for antenatal and neonatal haemoglobinopathy screening programmes in the United Kingdom. Both reports and commentators have emphasised the importance of developing a standardised instrument for collecting ethnicity data and recommended early development of such work. An examination of the evidence base on the use of ethnicity as a primary screening tool reveals substantial variability in practice and in the quality of data collected, with risk group misclassification as high as 20% against a recommended target of under 5.5%. The literature on the conceptual basis and structure of ethnicity questions, method of assignment in data collection, and level of resolution on categorisation is reviewed to identify the most appropriate content and format of a screening question for the haemoglobinopathies. Question options are evaluated, including the use of an extended 2001 Census classification and a 'non-North European' identifier and a candidate question based on 'family origins' is offered for debate. Finally, issues relating to the testing of the efficiency of an ethnicity question and the operationalising of its use for antenatal sickle cell screening are discussed.