Development of a measure of informed choice suitable for use in low literacy populations.

Objective: To assess the reliability and validity of a simplified questionnaire-based measure of informed choice in populations with low literacy. The measure comprises (a) knowledge about the test and (b) attitudes towards undergoing the test. Responses to (a) and (b) together with information on test uptake, are used to classify choices as informed or uninformed.

Methods: A cross-sectional study of 79 pregnant women (46 women with higher, and 33 with lower education levels) completed a simplified questionnaire, a standardised questionnaire and a semi-structured interview about antenatal sickle cell and thalassaemia (SCT) screening. The measures used were: (a) informed choice, based on knowledge about the test, attitudes towards undergoing the test, and uptake of the test and (b) ease of completion measures.

Results: The simplified measures of knowledge and attitudes were able to distinguish between women classified according to interview responses as having good or poor knowledge (knowledge scores 6.8 versus 3.2, p<0.001), and positive or negative attitudes towards undergoing the test (attitude scores 20.6 versus 16.2, p=0.023). There was no difference in rates of informed choice derived from the simplified or standardised measures (54% versus 51%, 95% CI difference -11 to 19). Women with lower levels of education found the simplified questionnaire easier to complete than the standardised version (11.0 versus 9.6, p=0.009). Those with higher levels of education found no difference in ease of completion between the two versions of the questionnaire (11.8 versus 11.6, p=0.54).

Conclusion: A simplified questionnaire-based measure of informed choice in antenatal SCT screening is as reliable and valid as a more complex standardised version and for those with less education, easier to complete.

Practice Implications: The simplified questionnaire-based measure of informed choice is suitable for use in populations with low and high levels of education.