Development of a measure of the process of informed decision-making about prenatal genetic screening in expectant women

Abstract

Existing literature shows low levels of informed decision-making regarding prenatal genetic screening (IDM-PGS) in expectant women. In an attempt to increase autonomy and promote more ethical healthcare, this study aims to develop an instrument to measure of an expectant woman’s informed decision-making regarding prenatal genetic screening. The instrument was developed based on review of the literature. Thorough psychometric testing including content validity analysis, cognitive interviewing, and readability analysis, as well as exploratory administration for criterion-related validity, construct validity, factor analysis and reliability was performed. The population of interest is women who are pregnant or may become pregnant, between the ages of 18 and 34, with no known genetic predispositions. A sample of eight women was recruited for the cognitive interviews, 433 for the exploratory administration and 111 participants in the two-week retest. Results show the instrument is a valid and reliable measure of IDM-PGS. Content validity was achieved after two rounds of expert review and feedback. Cognitive interviews showed high understanding of items in the instrument. Readability analysis resulted in a high grade level, but was justified in the highly technological nature of the information. Criterion-related validity showed a statistically significant ability for the instrument to predict participant action based on results from the IDM-PGS. Construct validity was validated by exploratory factor analysis and known group analysis. Factor analysis resulted in factor loading in line with the developed conceptual model. Known group analysis showed individuals with medical training were significantly more likely to measure high on the IDM-PGS. Reliability was confirmed. The highly valid and reliable nature of this instrument shows its general applicability to various settings. Thus, healthcare providers can apply this instrument in clinical settings to measure the IDM-PGS in expectant women. The instrument is adaptable and should be adapted in diverse populations. In addition to future implementation and study, the results of this study indicate policy implications as well. Policy level changes and implementation of this instrument could increase IDM-PGS for all expectant couples.