Psychosocial factors affecting uptake of prenatal genetic testing: a pilot study

Pivetti, Monica; Melotti, Giannino; Morselli, Davide; Olivieri, Mariangela

doi:10.1002/pd.4248

Cited by 5 publications

(2 citation statements)

References 72 publications

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“…If the decision to undergo amniocentesis is not fully informed by objective risk estimates, and there is no clear association between DS screening results and women’s decision to undergo amniocentesis, what drives the decision? Previous work has suggested several factors that predict test uptake: positive attitudes toward prenatal diagnostic tests, perception of prenatal diagnostic tests as reliable, and requests for more scientific information [ 25 ]. A study conducted in Israel found that use of amniocentesis by low risk women was associated with older age and receipt of more information about the test [ 26 ].…”

Section: Introductionmentioning

confidence: 99%

The limited effect of information on Israeli pregnant women at advanced maternal age who decide to undergo amniocentesis

Grinshpun‐Cohen

Miron‐Shatz

Berkenstet

et al. 2015

Isr J Health Policy Res

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BackgroundA primary goal of amniocentesis is the detection of trisomy 21 (Down syndrome- DS) in the fetus. This procedure involves a small risk of miscarriage. As the risk of DS increases with maternal age, screening tests (maternal serum triple test and others) and age are used to generate a risk assessment, and amniocentesis is offered to women with high risk. In Israel, amniocentesis is government funded for women of advanced maternal age (AMA, i.e., ≥35 years), even if their risk assessment is low.The purpose of this study was to explore the reasons AMA women undergo amniocentesis, their knowledge about risk estimates, and to evaluate whether their decision is informed.MethodsShortly after undergoing amniocentesis, 42 consecutive women without a medical indication for amniocentesis other than age, completed a questionnaire that assessed their knowledge and opinions regarding screening tests, pregnancy termination, amniocentesis risks and the factors that affected their decision.ResultsWomen rarely deliberated before undergoing amniocentesis. One third of those who had the screening test did not wait for the results before undergoing amniocentesis. Only one third of those who received the screening results remembered their risk estimation before going ahead with amniocentesis. Almost half (41 %) cited “age” as their main reason for undergoing amniocentesis, though only 44 % of these women could recall their age related DS risk. Sixty percent estimated their DS risk as low or very low but still had amniocentesis. Most participants (74 %) stated that they would consider termination of the pregnancy if the fetus was diagnosed with an intellectual deficit.ConclusionsThese results cast doubt on whether AMA women’s decision to undergo amniocentesis is based on risk estimates, as women seem to disregard risk estimates, and sometimes not even wait for them when making the decision. The policy of funding amniocentesis solely on the basis of age may have led to the conception that being over 35 alone is sufficient reason to undergo amniocentesis. This finding should inform policy makers, as it raises questions about the link between public funding and the choices of individual women, and has implications for healthcare expenditures.

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Section: Introductionmentioning

confidence: 99%

The limited effect of information on Israeli pregnant women at advanced maternal age who decide to undergo amniocentesis

Grinshpun‐Cohen

Miron‐Shatz

Berkenstet

et al. 2015

Isr J Health Policy Res

View full text Add to dashboard Cite

show abstract

“…For example, in narratives of pregnancy, women often possess an embodied, experiential knowledge about the health of their unborn child and the state of their pregnancy (Browner and Press 1997;Etchegary et al 2008). Other studies have described the importance of religious or spiritual convictions in determining individual attitudes towards prenatal testing, results, and decisions (Ahmed et al 2006;Ahmed, Green, and Hewison 2006;Kobelka, Mattman, and Langlois 2009;Leung et al 2004;Pivetti et al 2013;Seror and Ville 2010;Seth et al 2011). Informal stories of pregnancy and childbirth shared among women with similar experiences teach coping mechanisms and can provide information accrual for rarer diagnoses where there is a dearth of formal biomedical information (Lowe 2005).…”

Section: Beyond the Biomedicalmentioning

confidence: 99%

Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

Rubel

Werner‐Lin

Barg

2017

Cult Med Psychiatry

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To assess how participants receiving abnormal prenatal genetic testing results seek information and understand the implications of results, 27 US female patients and 12 of their male partners receiving positive prenatal microarray testing results completed semi-structured phone interviews. These interviews documented participant experiences with chromosomal microarray testing, understanding of and emotional response to receiving results, factors affecting decisionmaking about testing and pregnancy termination, and psychosocial needs throughout the testing process. Interview data were analyzed using a modified grounded theory approach. In the absence of certainty about the implications of results, understanding of results is shaped by biomedical expert knowledge (BEK) and cultural expert knowledge (CEK). When there is a dearth of BEK, as in the case of receiving results of uncertain significance, participants rely on CEK, including religious/spiritual beliefs, "gut instinct," embodied knowledge, and social network informants. CEK is a powerful platform to guide understanding of prenatal genetic testing results. The utility of culturally situated expert knowledge during testing uncertainty emphasizes that decision-making occurs within discourses beyond the biomedical domain. These forms of "knowing" may be integrated into clinical consideration of efficacious patient assessment and counseling. Rubel et al. 3

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A Priori Attitudes Predict Amniocentesis Uptake in Women of Advanced Maternal Age: A Pilot Study

Grinshpun‐Cohen

Miron‐Shatz

Rhee-Morris

et al. 2015

Journal of Health Communication

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Amniocentesis is an invasive procedure performed during pregnancy to determine, among other things, whether the fetus has Down syndrome. It is often preceded by screening, which gives a probabilistic risk assessment. Thus, ample information is conveyed to women with the goal to inform their decisions. This study examined the factors that predict amniocentesis uptake among pregnant women of advanced maternal age (older than 35 years old at the time of childbirth). Participants filled out a questionnaire regarding risk estimates, demographics, and attitudes on screening and pregnancy termination before their first genetic counseling appointment and were followed up to 24 weeks of gestation. Findings show that women's decisions are not always informed by screening results or having a medical indication. Psychological factors measured at the beginning of pregnancy: amniocentesis risk tolerance, pregnancy termination tolerance, and age risk perception affected amniocentesis uptake. Although most women thought that screening for Down syndrome risk would inform their decision, they later stated other reasons for screening, such as preparing for the possibility of a child with special needs. Findings suggest that women's decisions regarding amniocentesis are driven not only by medical factors, but also by a priori attitudes. The authors believe that these should be addressed in the dialogue on women's informed use of prenatal tests.

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Psychosocial factors affecting uptake of prenatal genetic testing: a pilot study

Abstract: Empirical researches investigating pregnant women's beliefs and attitudes relating to actual test uptake could help genetic counsellors and policy makers to better understand their client's profile in relation to the determining factors affecting the undertaking of PGT.

Cited by 5 publications

References 72 publications

The limited effect of information on Israeli pregnant women at advanced maternal age who decide to undergo amniocentesis

The limited effect of information on Israeli pregnant women at advanced maternal age who decide to undergo amniocentesis

Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

A Priori Attitudes Predict Amniocentesis Uptake in Women of Advanced Maternal Age: A Pilot Study

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