Informed decision-making in prenatal screening for Down's syndrome: What knowledge is relevant?

Schoonen, H.M.H.J.D.; van Agt, H.M.E.; Essink-Bot, M.L.; Wildschut, H.I.; Steegers, E.A.P.; de Koning, H.J.

doi:10.1016/j.pec.2010.07.037

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Volume 84, Issue 2 , Pages 265-270, August 2011

Informed decision-making in prenatal screening for Down's syndrome: What knowledge is relevant?

H.M.H.J.D. Schoonen
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Department of Obstetrics and Gynaecology, division of Obstetrics and Prenatal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Corresponding author at: Department of Public Health, Erasmus MC University Medical Center Rotterdam, Room AE-206, 3000 CA Rotterdam, The Netherlands. Tel.: +31 10 704 3732; fax: +31 10 703 8474.
H.M.E. van Agt
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
M.L. Essink-Bot
- Department of Social Medicine, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands
H.I. Wildschut
- Department of Obstetrics and Gynaecology, division of Obstetrics and Prenatal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
E.A.P. Steegers
- Department of Obstetrics and Gynaecology, division of Obstetrics and Prenatal Medicine, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
H.J. de Koning
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands

Received 4 March 2010; received in revised form 16 June 2010; accepted 23 July 2010. published online 27 August 2010.

Abstract

Objective

To determine the content of decision-relevant knowledge needed for informed decision-making about (non-) participation in prenatal screening for Down's syndrome (DS), in order to develop a knowledge questionnaire for routine application in large-scale programme evaluations.

Methods

A generic list of content domains for knowledge about screening was extracted from the literature. Items reflecting specific knowledge domains were constructed. An expert group of professionals and pregnant women expressed whether domains and items represented decision-relevant information.

Results

All presented domains were scored as (very) important. Options when receiving an ‘increased probability for DS’ test result, the meaning of this result, the aim of the screening, and voluntary nature of the test were scored as most important. The condition being screened for, prevalence, and the screening procedure were scored as relatively less important, with a high amount of expert consensus.

Conclusion

A knowledge measure for prenatal screening for DS was developed, based on domains and items acquired by expert consensus.

Practice implications

This measure of decision-relevant knowledge can be used in routine, large-scale evaluations of the procedure for offering information about prenatal screening for DS.

Keywords: Informed decision-making, Informed choice, Prenatal, Antenatal, Screening, Down's syndrome, Information, Knowledge, Measure, Questionnaire, Evaluation