Informed decision making in the context of prenatal screening

Berg, Matthijs van den; Timmermans, Daniëlle R.M.; Kate, Leo P. ten; Vugt, J.M.G. van; Wal, Gerrit van der

doi:10.1016/j.pec.2005.09.007

Cited by 149 publications

(142 citation statements)

References 29 publications

Supporting

Mentioning

136

Contrasting

Unclassified

Order By: Relevance

“…11,13,26,[28][29][30][31][32][33][34][35] Twenty-two studies were prospective, 12,28,[36][37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55] including cross-sectional, 41,42,49 quasi-experimental, 53 pilot, 50 and longitudinal study designs. 52 Of the RCTs, five involved an information or educational intervention, 28,29,[32][33][34] five randomised the screening offer, 11,13,26,30,35 and there was one decision aid trial. 31 The 33 studies were published between 1991, …”

Section: Summary Of Studiesmentioning

confidence: 99%

“…2 Evaluation of genetic screening programmes requires accurate, validated measures of informed choice, which is a complex, multidimensional construct, defined in various ways throughout the literature. [6][7][8][9][10][11][12] Informed choice may literally be measured through evaluation of knowledge and uptake of screening, to indicate whether the decision to accept or decline screening was 'informed' . However, definitions of informed choice more commonly involve at least two elements: having a factual understanding and making a choice aligned with one's values.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Measuring informed choice in population-based reproductive genetic screening: a systematic review

et al. 2014

View full text Add to dashboard Cite

Genetic screening and health-care guidelines recommend that programmes should facilitate informed choice. It is therefore important that accurate measures of informed choice are available to evaluate such programmes. This review synthesises and appraises measures used to evaluate informed choice in population-based genetic screening programmes for reproductive risk. Databases were searched for studies offering genetic screening for the purpose of establishing reproductive risk to an adult population sample, in which aspects of informed choice were measured. Studies were included if, at a minimum, measures of uptake of screening and knowledge were used. Searches identified 1462 citations and 76 studies were reviewed in full text; 34 studies met the inclusion criteria. Over 20 different measures of informed choice were used. Many measures lacked adequate validity and reliability data. This systematic review will inform future evaluation of informed choice in population genetic screening programmes.

show abstract

Section: Summary Of Studiesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Measuring informed choice in population-based reproductive genetic screening: a systematic review

et al. 2014

View full text Add to dashboard Cite

show abstract

“…Direct provider counseling may be insufficient for patients to fully comprehend such complex information, particularly within the context of a brief clinical encounter. [1][2][3][4][5][6][7][8] Counseling may also be limited due to factors such as provider bias or limitations in provider knowledge. Further, women with low levels of education and/or health literacy are particularly likely to have inadequate understanding of prenatal genetic testing.…”

Section: Introductionmentioning

confidence: 99%

A Randomized Trial of a Prenatal Genetic Testing Interactive Computerized Information Aid

Yee

Wolf

Mullen

et al. 2014

Obstetrical &Amp; Gynecological Survey

View full text Add to dashboard Cite

OBJECTIVE-To determine whether an interactive computer program could improve patient knowledge regarding genetic screening and diagnostic concepts.METHODS-In this randomized trial, women 6-26 weeks' gestation were assigned to standard care with provider-based counseling or to augmented counseling with an interactive computer program. The computer-based tool conveyed information about genetic testing options. Women were administered a 23-item test of content knowledge immediately and 2-4 weeks after exposure. Test scores were compared between groups at both points using T-tests. RESULTS-150women were randomized equally between groups. Groups were similar with regard to demographic characteristics. Women randomized to the interactive tool correctly answered a significantly greater proportion of questions than those who received standard counseling (69.4% ±14.2% vs. 46.0% ± 15.2%, p<.001) on the immediate questionnaire. One hundred and twenty-three (82%) participants participated in the follow-up test. Women randomized to the tool continued to correctly answer a significantly greater proportion of questions (60.6% ± 16% vs. 49.7% ± 18.9%, p=.001). Education, health literacy, electronic health literacy, and other discussions with providers were not associated with a differential benefit from the educational intervention.

show abstract

“…[1,2] Research has also considered women's attitudes regarding testing and evaluated the degree to which women's decisions whether to have screening tests are informed and consistent with their own preferences. [3][4][5][6][7]. Beyond these considerations, however, it is important to determine whether women are able, once a screening test is performed, to understand the test results and incorporate that information into their decision making about more invasive diagnostic tests such as amniocentesis.…”

Section: Introductionmentioning

confidence: 99%

Does labeling prenatal screening test results as negative or positive affect a woman’s responses?

Zikmund‐Fisher

Fagerlin

Keeton

et al. 2007

American Journal of Obstetrics and Gynecology

View full text Add to dashboard Cite

Objective-We tested whether adding interpretive labels (e.g., "negative test") to prenatal genetic screening test results changes perceived risk and preferences for amniocentesis.Study Design-Women (N=1,688) completed a hypothetical pregnancy scenario via the Internet. We randomized participants into two groups: high (12.5/1000) risk of fetal chromosomal problems or low (2/1000) risk. After prenatal screening, estimated risk was identical (5/1000) for all participants, but results were provided either alone or with interpretive labels.Results-When receiving test results without labels, all participants react similarly. With labels, participants receiving "positive" or "abnormal" results reported higher perceived risk (p<0.001), greater worry (p<0.001), and greater interest in amniocentesis (57% vs. 37%, p<0.001) than those receiving "negative" or "normal" results. Conclusions-Interpretive labels for test results can induce larger changes to women's risk perceptions and behavioral intentions than numerical results alone do, creating decision momentum. This finding has broad clinical implications for patient-provider communication.

show abstract

Informed decision making in the context of prenatal screening

Cited by 149 publications

References 29 publications

Measuring informed choice in population-based reproductive genetic screening: a systematic review

Measuring informed choice in population-based reproductive genetic screening: a systematic review

A Randomized Trial of a Prenatal Genetic Testing Interactive Computerized Information Aid

Does labeling prenatal screening test results as negative or positive affect a woman’s responses?

Contact Info

Product

Resources

About