Abstract

ObjectivesOffering antenatal sickle cell and thalassaemia (SCT) screening early in pregnancy can maximize the range of post-screening choices available, however these benefits should not be obtained at the expense of informed choice. This study examined whether offering this screening in primary care at the time of pregnancy confirmation compromises women making informed choices.DesignPartial factorial, cluster randomized controlled trial.Setting25 general practices in two socially deprived UK areas.Participants464 pregnant women offered antenatal SCT screening.InterventionPractices were randomly allocated to offer pregnant women screening: i) in primary care at time of pregnancy confirmation, with parallel partner testing (n = 191), ii) in primary care at time of pregnancy confirmation, with sequential partner testing (n = 158), or iii) in secondary care by midwives, with sequential partner testing (standard care, n = 115).Main outcomeInformed choice – a classification based on attitudes, knowledge and test uptake.Results91% of woman underwent screening. About a third (30.6%) made an informed choice to accept or decline screening: 34% in primary care parallel group; 23.4% in primary care sequential and 34.8% in secondary care sequential. Allowing for adjustments, rates of informed choice did not vary by intervention group: secondary care versus primary care with parallel partner testing OR 1.07 (95% CI 0.56 to 2.02); secondary care versus primary care with sequential partner testing OR 0.67 (95% CI 0.36 to 1.25). Uninformed choices were generally attributable to poor knowledge (65%).ConclusionOffering antenatal SCT screening in primary care did not reduce the likelihood that women made informed choices. Rates of informed choice were low and could be increased by improving knowledge.

Highlights

  • There is a consensus that choices made about undergoing antenatal screening for fetal abnormalities should be informed.[1,2,3] Research on the factors associated with informed choice for people making healthcare choices has tended to assess one dimension only, most often knowledge about a procedure

  • A consensus is emerging that informed choices have two core characteristics: first, they reflect an individual’s values, and second, they are made in the context of good knowledge

  • This study examines whether offering antenatal sickle cell and thalassaemia (SCT) screening in primary care at the time of pregnancy confirmation compromises the making of informed choices

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Summary

Introduction

There is a consensus that choices made about undergoing antenatal screening for fetal abnormalities should be informed.[1,2,3] Research on the factors associated with informed choice for people making healthcare choices has tended to assess one dimension only, most often knowledge about a procedure. It is widely acknowledged that informed choice is more complex than this and involves several dimensions. A consensus is emerging that informed choices have two core characteristics: first, they reflect an individual’s values, and second, they are made in the context of good knowledge. A decision based on relevant knowledge, consistent with the decision-maker’s values and behaviourally implemented.[4]. Choices based on poor knowledge or which are inconsistent with attitudes towards undergoing the screening test are classified as uninformed

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