Computerized Prenatal Genetic Testing Decision-Assisting Tool

Kuppermann, Miriam; Norton, Mary E.; Gates, Elena; Gregorich, Steven E.; Learman, Lee A.; Nakagawa, Sanae; Feldstein, Vickie A.; Lewis, James J.; Washington, Armenta; Nease, Robert F.

doi:10.1097/aog.0b013e31818e7ec4

Cited by 130 publications

(137 citation statements)

References 12 publications

Supporting

Mentioning

134

Contrasting

Order By: Relevance

“…45 Eight studies were conducted in continental Europe, 11,13,38,[43][44][45][46]53 and 14 were from the United Kingdom. 12,26,29,30,[32][33][34][35]37,[39][40][41]51,54 Seven studies were from Australia, 31,36,[48][49][50]52,55 three from the United States, 28,42,56 and one from Taiwan. 47 Prenatal screening for DS was the most common screening programme evaluated (27 studies).…”

Section: Summary Of Studiesmentioning

confidence: 99%

“…47 Prenatal screening for DS was the most common screening programme evaluated (27 studies). [11][12][13]28,29,[31][32][33][34][35][37][38][39][40][42][43][44][45][46][47][48][49][51][52][53]55,56 Three studies offering population carrier screening in prenatal settings included screening single gene disorders: sickle cell disease and thalassaemia (haemoglobinopathies (Hb)) 26,41 and cystic fibrosis (CF). 30 Of the 33 studies reviewed, only one included partners of the pregnant women, 30 and one offered CF carrier screening to men as well as women.…”

Section: Summary Of Studiesmentioning

confidence: 99%

“…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%

“…30,54 Knowledge results were reported in different ways using means, 11,12,29,32,34,36,38,40,41,[51][52][53]55,56 medians, 26,28,35,36 dichotomised cutoffs of good knowledge, 11,13,26,31,36,39,[43][44][45][46]49,55 categories, 32,37,45,46,48,50 and percentage of items answered correctly. 28,30,42,47,54 Perceptions of knowledge and information Two studies measured perception of knowledge, 47,56 and five studies measured perception of the information provided. 32,37,43,49,53 Measuring part...…”

Section: Summary Of Studiesmentioning

confidence: 99%

See 3 more Smart Citations

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: Summary Of Studiesmentioning

confidence: 99%

Section: Summary Of Studiesmentioning

confidence: 99%

Section: Summary Of Studiesmentioning

confidence: 99%

See 2 more Smart Citations

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

et al. 2014

View full text Add to dashboard Cite

show abstract

“…11 In 2009, Kuppermann et al showed that use of an interactive prenatal diagnostic decision tool resulted in better patient satisfaction, more decision certainty, and more accurate estimates of risk among women receiving prenatal genetic counseling. 19 However, this tool was not developed for a low literacy population and compared the computerized tool to a standardized written educational booklet.…”

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

Effect of Enhanced Information, Values Clarification, and Removal of Financial Barriers on Use of Prenatal Genetic Testing

Kuppermann

Pena

Bishop

et al. 2014

JAMA

Self Cite

110

124

View full text Add to dashboard Cite

Importance Prenatal genetic testing guidelines recommend providing patients with detailed information to allow informed, preference-based screening and diagnostic testing decisions. The effect of implementing these guidelines is not well understood. Objective Toanalyze the effect of a decision support guide and elimination of financial barriers to testing on use of prenatal genetic testing and decision-making among women of varying literacy and numeracy levels. Design Randomized trial conducted from 2010-2013. Setting Prenatal clinics at three county hospitals, a community clinic, an academic center, and three medical centers of an integrated health care delivery system in the San Francisco Bay area. Participants English- or Spanish-speaking women who had not yet undergone screening and/or diagnostic testing and remained pregnant at 11 weeks gestation (n=710). Interventions A computerized, interactive decision support guide and access to prenatal testing with no out-of-pocket expense (n=357) or usual care as per current guidelines (n=353). Main Outcome Measures The primary outcome was invasive diagnostic test use, obtained via medical record review. Secondary outcomes included testing strategy undergone, and knowledge, risk comprehension, decisional conflict and decision regret at 24-36 weeks' gestation. Results Women randomized to the intervention group, compared to those randomized to the control group, were less likely to have invasive testing [5.9% vs. 12.3%, odds ratio (OR) 0.45, 95% CI 0.25-0.80] and more likely to forego testing altogether [25.6% vs. 20.4%, OR 3.30 (reference group screening followed by invasive testing), CI 1.43-7.64]. They also had higher knowledge scores (9.4 vs. 8.6 on a 15-point scale, mean group difference 0.82, CI 0.34-1.31), and were more likely to correctly estimate the amniocentesis-related miscarriage risk (73.8% vs. 59.0%, OR 1.95, CI 1.39-2.75) and their age-adjusted chance of carrying a fetus with trisomy 21 (58.7% vs. 46.1%, OR 1.66, CI 1.22-2.28). Significant differences did not emerge in decisional conflict or decision regret. Conclusions and Relevance Full implementation of prenatal testing guidelines using a computerized, interactive decision support guide in the absence of financial barriers to testing resulted in lesser test use and more informed choices. If validated in additional populations, this approach may result in more informed and preference-based prenatal testing decision making, and fewer women undergoing testing.

show abstract

Computerized Prenatal Genetic Testing Decision-Assisting Tool

Abstract: I.

Cited by 130 publications

References 12 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

Effect of Enhanced Information, Values Clarification, and Removal of Financial Barriers on Use of Prenatal Genetic Testing

Contact Info

Product

Resources

About