| Literature DB >> 33489303 |
Valentina Di Mattei1,2, Federica Ferrari2, Gaia Perego3, Valentina Tobia1, Fabio Mauro2, Massimo Candiani1,2.
Abstract
This review examines the factors that affect the decision-making process of parental couples evaluating prenatal screening and diagnostic tests. A systematic search was performed using PubMed and PsycInfo databases. The 46 included studies had to: investigate the decision-making process about prenatal testing; focus on tests detecting trisomy 21, 18, 13, and abnormalities of sex chromosomes; be published in English peer-reviewed journals. The decision-making process seems composed of different levels: an individual level with demographic, clinical, and psychological aspects; a contextual level related to the technical features of the test and the information received; a relational level involving family and society.Entities:
Keywords: clinical health psychology; genetic testing; health care; pregnancy; systematic review
Year: 2021 PMID: 33489303 PMCID: PMC7809316 DOI: 10.1177/2055102920987455
Source DB: PubMed Journal: Health Psychol Open ISSN: 2055-1029
Figure 1.Study selection.
Characteristics of included studies.
| Authors, year, country | Participants | Risk’s level of pregnancy | Type of Study | Variables | Test uptake | Significant factors of decision-making | NIH Quality assessment |
|---|---|---|---|---|---|---|---|
| 42 women | Low risk | Quantitative | - Accurate recall of risk estimates; | 46.7% amniocentesis, of which | - All: age, wanting certainty, having performed amniocentesis in a previous pregnancy, recommendation of the doctor. | ||
| 448 women | Low risk | Quantitative | - Sociodemographic characteristics; | 55.13% NIPT | - Perceived risk and acceptability: undergoing non-invasive prenatal tests is influenced by the risk of carrying a fetus with DS less acceptable and considering the risk of miscarriage more acceptable. | Fair | |
| 4095 women | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Knowledge: women undergoing NT scan had a significantly better knowledge about first-trimester combined DS screening compared with women who did not participate in such examination. | Fair | |
| 4111 women | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Knowledge: a higher level of knowledge was associated with less decisional conflict, higher levels of wellbeing and no worries. | Fair | |
| 139 women | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Sociodemographic characteristics: non-Caucasian women were more likely to consider a false positive to be a less important decision-making factor. | Fair | |
| 112 couples | High risk | Quantitative | - Sociodemographic characteristics; | // | - Relational factors: 86% shared the decision regarding amniocentesis with partners; men perceived their partners to have a significantly higher influence on the decision; marital intimacy was related to decision sharing and couple’s agreement; men’s participation in genetic counseling was not associated with acceptance of amniocentesis. | Fair | |
| 510 women, plus data collected by midwives on 6435 pregnancies | All risk levels | Quantitative | - Sociodemographic characteristics; | 32.8% willing to participate to NIPT | - Sociodemographic characteristics: older women had a better knowledge of DS. | Poor | |
| 534 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 99.6% cFTS | - Sociodemographic characteristics: informed choice was predicted by woman’s and partners’ education (>for medium and high education). | Good | |
| 65 women | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Test characteristics: test cost, detection rate and delay in receiving results. | Fair | |
| 659 women | All risk levels | Mixed methods | - Preparedness for prenatal diagnosis; | // | - Preparedness: the majority of women never thought anything could be wrong with their fetus and had not discussed with the father or the healthcare workers that possibility. | Poor | |
| 147 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 54% cFTS | - Psychological factors: obtaining information regarding the baby’s health was the main reason for accepting cFTS, a low perceived risk and unfavorable features of the test were the main reasons for declining. | Fair | |
| 358 women | All risk levels | Quantitative | - Sociodemographic characteristics; | Perspective IF their screening test was positive: | - Sociodemographic characteristics: women with secondary education or below prefer IPT; single women showed a higher acceptable detection rate (99.3%). | Fair | |
| 2643 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 100% cFTS of which 20.2% did Stepwise Sequential screening following cFTS results. | - Sociodemographic characteristics: women who declined Stepwise Sequential screening were more likely to be Black and Hispanic and to have lower education level. | Fair | |
| 334 women | All risk levels | Quantitative | - Test characteristics; | 42.6% willing to participate to NIPT | - Test characteristics: NIPT’s detection rate, indications, performance. | Poor | |
| 1087 women | All risk levels | Quantitative | - Test characteristics | 86.7% willing to participate to NIPT | - Test characteristics: the most important factor associated with decision-making was the safety for the baby. | Fair | |
| 6782 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 98.1% cFTS | - Sociodemographic characteristics: In the high-risk group, Afro-Caribbean racial origin predicted a negative attitude toward CVS. | Fair | |
| 393 health professionals | All risk level | Quantitative | - Sociodemographic characteristics; | // | - Sociodemographic characteristics: health professionals’ age, years of experience and religion; women’s relationship status and education. | Fair | |
| 596 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 85.1% consider prenatal test as an option | - Sociodemographic characteristics and religiosity: more likely to decline prenatal testing when age ⩽ 35 years, low or intermediate level of education, net monthly household income ⩽ €2999, religious. | Fair | |
| 271 women | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Clinical characteristics: there is a significant correlation between previous spontaneous abortion and negative feelings about amniocentesis. | Poor | |
| 105 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 100% cFTS | - Reasons for undergoing CFTS testing: be sure of baby’s health, ease worries, age ⩾ 35 | Poor | |
| 1003 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 78.4% ultrasound | - Attitude toward prenatal examination: positive attitude toward prenatal examinations and NIPT because are risk free procedures; worry about the baby’s health and the urge to have as much information as possible about the fetus. | Fair | |
| Seven et al., 2016 (TURKEY) | 274 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 36.1% prenatal screening | - Sociodemographic characteristics: parity, having a child with a genetic disorder, duration of marriage. | Fair |
| 141 women | All risk levels in IPT group | Quantitative | - Sociodemographic characteristics; | 53.90% IPT | - Reasons for accepting IPT: ease worries 63.2%; be sure of baby’s health 44.7%; age ⩾ 35 23.7%; screening indicated high risk 13.2%. | Fair | |
| 28 (qualitative) + 185 women (quantitative) | All risk levels | Mixed method | - Test characteristics | 78.6% cFTS | - Test characteristics: cFTS better than STS for earlier estimation, higher accuracy. | Fair | |
| 315 women | All risk levels | Quantitative | - Sociodemographic characteristics; | 80% NIPT | - Fertility treatment: women with high risk at CFTS and who had undergone fertility treatment valued receiving comprehensive genetic information more than risk of miscarriage. | Fair | |
| 203 women before cFTS | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Psychological factors: having much information as possible. | Good | |
| 882 women | All risk levels | Quantitative | - Sociodemographic characteristics; | // | - Information provision: being informed by physician, in person and ahead of time. | Fair | |
| 42 women | High risk | Quantitative | - Sociodemographic characteristics; | 100% amniocentesis | - Sociodemographic characteristics: almost half participants considered age as the main reason for undergoing amniocentesis, but only 44% of these women could recall their age-related risk for a baby with DS. | Fair | |
| 49 women | High risk | Mixed method | - Sociodemographic characteristics; | 90% DS screening | - Psychological factors: the most worried women about pregnancy outcome and the least concerned about procedure-related risks were the most likely to undergo amniocentesis. | Fair | |
| 381 women | All risk levels | Quantitative | - Attitudes toward DS; | 51% would (prospectively) accept NIPT | - Attitudes toward DS: 40% - with NIPT, women would think less comprehensively about participation in prenatal screening; 40% - with NIPT, fewer children with Down syndrome would be born; 68% - NIPT as an option for couples who just want to be able to prepare themselves in case of a child with DS. | Fair | |
| 381 women (quantitative) + 46 women (qualitative) | All risk levels | Mixed method | - Test characteristics; | 63% for quantitative and 48% for qualitative study had reason for declining cFTS. | - Sociodemographic characteristics: women who reported reasons for declining cFTS were mainly Dutch (92% for quantitative and 91% for qualitative study) and highly educated (52% for quantitative and 77% for qualitative study). | Poor | |
| 582 women (Time1: at the time of NIPT testing) | All risk levels | Mixed methods | - Sociodemographic characteristics; | // | - Psychological factors: reassurance was the main motivator for accepting NIPT, particularly amongst medium risk women, with high risk women inclined to accept NIPT to inform decisions around invasive testing. | Fair | |
| 1091 women | High risk | Quantitative | - Test characteristics; | 96.5% NIPT | - Test characteristics: safety, accuracy. | Fair | |
| 254 women | High risk | Mixed method | - Test characteristics; | 73.2% NIPT | - Test characteristics: easiness, rapidness, physical comfort, timing, safety of NIPT, accuracy of IPT. | Fair | |
| 262 women | High risk | Quantitative | - Sociodemographic characteristics; | 90.5% NIPT | - Knowledge: value-inconsistency is prevalent among NIPT decliners, leading to a much higher rate of uninformed choice than in NIPT acceptors. | Fair | |
| 262 women | All risk levels | Quantitative | - Decisional conflict and regret; | 79.01% NIPT | - Knowledge: insufficient knowledge about NIPT was associated with elevated anxiety and with decisional regret. | Fair | |
| 141 couples | High risk | Quantitative | - Relational factors: differences between pregnant women and their partner in regard to information sources, feelings; relationships with others; | 85.9% NIPT | - Relational factors: partners perceived a passive role in the decision-making process; pregnant woman (more than partners) consulted for NIPT choice family and friends. | Good | |
| 481 women | High risk | Quantitative | - Sociodemographic characteristics; | 72.9% amniocentesis | - Sociodemographic characteristics: higher educational attainment and higher income level are associated to higher amniocentesis uptake; having a baby with congenital defects. | Fair | |
| Cheng et al., 2018 (CHINA) | 84 women | High risk | Quantitative | - Sociodemographic characteristics; | 44.05% IPT | - Sociodemographic characteristics: women choosing NIPT had a higher educational background than those choosing amniocentesis. | Fair |
| Schlaikjær-Hartwig et al., 2018 (DENMARK) | 339 women | High risk | Quantitative | - Decisional conflict; | 75.4% IPT | - Psychological factors: choosing NIPT was associated with a high decisional conflict; decisional conflict increased when receiving genetic counselling the same day; decisional conflict decreased when satisfaction with the genetic counselling was higher and in association with the personality trait “alexithymia”. | Good |
| 11 women | High risk | Mixed method | - Sociodemographic characteristics; | 18.18% NIPT | - Psychological factors: emotionally and mentally unprepared to receive a high-risk prenatal screening result, the burden of responsibility to “do the right thing”. | Fair | |
| 882 women, 395 partners and 184 healthcare professionals | All risks levels | Quantitative | - Sociodemographic characteristics; | // | - Test characteristics: women and partners thought that their decision to test would be impacted by NIPT being accessible and free of charge; a majority of healthcare professionals thought that only high-risk pregnancies should be eligible for funding. | Poor | |
| 84 women | High risk | Quantitative | - Sociodemographic characteristics; | 44.05% IPT | - Sociodemographic characteristics: IPT associated to lower educational background. | Fair | |
| 2436 women | High risk | Quantitative | - Sociodemographic characteristics; | Preference: | - Test characteristics: aversion to risk of fetal loss related to IPT and aversion to ambiguity generated by incomplete information from NIPT. | Fair | |
| 181 women and 5 clinicians | High risk | Mixed method | Clinicians: | 82% NIPT | - Information provision: clinicians’ style of pre-test counseling. | Fair | |
| 274 parents and 141 clinicians (quantitative) + 26 parents and 10 clinicians (qualitative) | All risk levels | Mixed method | - Attitudes toward prenatal testing; | 100% prenatal testing | - Attitudes toward termination of pregnancy: Accepting termination of pregnancy in parents and offering it in clinicians was positively associated with attitudes toward prenatal testing and reproductive autonomy. | Fair |
NIPT: Non-Invasive Prenatal Test; IPT: Invasive Prenatal Test; cFTS: combined First Trimester Screening; CVS: Chorionic Villus Sampling; DS: Down Syndrome; OSCAR: One Stop Clinic for Assessment of Risk test; NHS screening: National Health Service screening; NT: nuchal translucency; STS: serum triple screening test.
NHS screening: measures two blood markers and provide a detection rate of approximately 60%.
OSCAR test: measures two blood markers and incorporates ultrasound techniques with a detection rate of approximately 90%.