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Table 2 Characteristics of studies with the theme ‘mis(communication)/patient satisfaction’

From: Latinx individuals’ knowledge of, preferences for, and experiences with prenatal genetic testing: a scoping review

Author (year) Data collection method (n = sample size; all sample sizes are restricted to Latina patients except the provider sample) [genetic testing type] Nativity Country of origin Findings [validated measurement tool]
Qualitative
Press (1993) [23] Patient interview (n = 20); provider interview (n = not disclosed); observation (n = 20) [AFP] Not assessed Mexico (1) Oral and written AFP related information provided in prenatal intakes was limited with most of the information being focused on the procedure itself. (2) Participants were satisfied with the amount of genetic information received. (3) Participants wanted AFP testing for reassurance that their pregnancy was normal
Browner (1995) [25] Patient interview (n = 20); observation (n = 35) [AFP] Not assessed Mexico [Marin Acculturation Scale] (1) Content delivered during PGT consultations was determined by how rushed the provider was rather than patient demographics. (2) Participants were satisfied with provider discussions on PGT. (3) Fifty four percent of participants were told what AFP screened for and 89% were told that AFP needed to be completed between 15 and 20 weeks of pregnancy
Markens (2003) [46] Patient interview (n = 157) [AFP, Amnio] Foreign born & US born Mexico (1) The participants’ male partners were often unable to attend genetic counseling appointments due to work related obligations/financial constraints. (2) Many participant couples expressed joint responsibility for parenting yet said female participants were responsible for deciding whether to undergo amniocentesis
Hunt (2006) [43] Patient interview (n = 40); provider interview (n = 50); observation (n = 101) [amnio] Foreign born & US born Mexico (1) Provider participants primarily discussed the patients’ risk status (either in regards to complications from the procedure or risk of fetal anomaly) during genetic counseling sessions. (2) Patient participants had difficulty engaging in conversations around risk, as their main concern was reassurance of a healthy pregnancy and fetus
Thompson (2015) [33] Patient interview (n = 25) [General PGT] Foreign born El Salvador, Honduras, Mexico (1) Participants were satisfied with genetic counseling sessions; every participant stated that all of their questions were answered and felt they had enough information to make an informed decision about PGT. (2) Eight participants said they would prefer group genetic counseling sessions to gain peer support and knowledge. Thirteen participants preferred individual sessions. (3) Participants wanted genetic counseling information in written form so they could take it home after the session
Floyd (2016) [21] Patient interview (n = 10) [cfDNA] Not assessed Not assessed (1) Spanish-speaking participants wanted genetic information in written form whereas English-speaking participants thought written information was not necessary, as they would turn to the internet for more information. (2) cfDNA was viewed as a way to prepare emotionally for the baby
Garza (2019) [27] Patient interview (n = 20) [General PGT] Foreign born Cuba, El Salvador, Guatemala, Honduras, Mexico (1) After a genetic counseling session with a Spanish-speaking genetic counselor, participants were satisfied with the amount of information received, valued PGT, liked how genetic counselors empowered them to make their own decisions about PGT, and preferred genetic information to be delivered verbally during genetic counseling sessions rather than in written form. (2) Thirty percent of participants chose to undergo PGT to learn more about their pregnancy
Page (2021) [17] Patient interview (n = 10) [General PGT] US born Not assessed [REAL-G Genetic Literacy Scale] (1) One hundred percent of participants said providers should describe PGT options and genetic abnormalities in lay terms. (2) Participants stated PGT would better prepare them, emotionally and financially, for their baby. (3) Lack of clarity from providers and risks associated with PGT were reasons participants declined PGT
Quantitative
Hawk (2011) [19] Patient interview (n = 48) [General PGT] Foreign born and US born Not assessed (1) Eighty five percent of Spanish-speaking participants believed printed information that accompanied prenatal genetic counseling sessions would be helpful in comparison to 47% of English-speaking participants
Bryant (2015) [9] Patient interview (n = 322) [General PGT] Not assessed Not assessed [Rapid Estimate of Adult Literacy in Medicine-Revised] (1) Latina participants who chose to complete a genetic counseling session in English were less likely to understand that PGT was optional than White participants
Wagner (2018) [44] Patient interview (n = 70) [General PGT] Not assessed Not assessed [Health Insurance Literacy Measurement Tool (HILMT)] (1) Latinx participants were 2.59 times more likely to want insurance information from their genetic counselors than White participants. (2) Latinx participants were also 2.31 time more likely to expect their genetic counselor to provide exact out of pocket costs than White participants
Ault (2019) [42] Observation (n = 7) [General PGT] Foreign born and US born Not assessed The researchers analyzed the differences between English-speaking genetic counseling sessions and genetic counseling sessions that were conducted by an English-speaking genetic counselor and a Spanish certified medical interpreter. (1) In comparison to English sessions, there was limited back channeling in the Spanish sessions; this disinvites individuals from expressing themselves. (2) The length of the Spanish and English sessions was similar but the content was not. More words were spoken by both the participant and genetic counselor in the English-speaking sessions than in the Spanish sessions. Genetic counselors spent the same proportion of time talking but said more and provided more clarity in the English sessions. (3) Participants in the English-speaking sessions were more likely to ask questions. (4) Back channeling, used to evaluate engagement, was more common in the English sessions
Molina (2019) [10] Patient interview (n = 292) [General PGT] Not assessed Not assessed [REALM-R & Lipkus Expanded Numeracy Scale] (1) Spanish-speaking participants preferred a provider driven decision-making process. (2) Compared to White participants, Latina participants were less likely to have a preference-concordant decision process
Mixed methods
Mittman (1998) [26] Patient interview (n = 826); observation (n = not disclosed) [Amnio; CVS] Foreign born and US born Not assessed (1) The non-directive genetic counseling led participants to seek advice from non-medical experts. 2) Participants understood genetic information when it was delivered in a culturally/linguistically concordant manner
Penchaszadeh (1998) [35] Patient interview (n = 100) [Amnio] Not assessed Not assessed (1) Reassurance of a normal pregnancy was the reason 31% of the participants wanted to have amniocentesis
Browner (1999a) [31] Patient interview (n = 129); observation (n = 65); chart review (n = 379) [Amnio] Foreign born and US born Mexico (1) Participants whose partner was present during the prenatal genetic counseling session were more likely to accept amniocentesis, but female participants had more of an influence on the amniocentesis decision than their male partners. (2) Fourteen percent of participants decided whether to undergo amniocentesis or not prior to the genetic counseling session. (3) Low levels of interaction between participants and genetic counselors was observed. (4) Participants were concerned about the pain and risks of amniocentesis. (5) Male partners acted as a liaison between medical providers and female participants
Browner (1999b) [32] Patient interview (n = 147); chart review (n = 379) [Amnio] Foreign born and US born Mexico (1) Thirty two percent of participants stated they wanted their genetic counselor to be more direct with recommendations about genetic testing. (2) Satisfaction and miscommunication between participants and genetic counselors were high
Moyer (1999) [45] Patient interview (n = 10) [AFP, CVS, Amnio] Not assessed Not assessed (1) Eighty three percent of participants felt genetic screening was useful, 67% felt a prenatal diagnosis was useful, 83% felt it was important to avoid having a child with a genetic abnormality, and 60% would consider a 1st or 2nd trimester abortion if the fetus was found to have down syndrome
Browner (2000a) [34] Patient interview (n = 43) [Amnio] Foreign born Mexico (1) Participants accepted amniocentesis for reassurance that their pregnancy was normal
Browner (2003) [41] Patient interview (n = 120); observation (n = 77) [Amnio] Foreign born and US born Mexico 1) The use of medical jargon, inability for genetic counselors to make strong recommendations, and poor translation led to miscommunication between genetic counselors and participants which in turn led participants to decline amniocentesis. (2) The inability for genetic counselors to address 'ethnic myths' out of a desire to respect the patient's culture led to miscommunication and an information gap
Hunt (2005) [24] Patient interview (n = 40); provider interview (n = 50); observation (n = 101) [AFP, Amnio] Foreign born and US born Mexico (1) Sixty three percent of participants did not understand why they were being referred to a genetic specialist, after an abnormal AFP, nor did they understand the reason for the AFP test. (2) Genetic counselors most often discussed that amniocentesis is optional and the risks of procedure and of anomalies. Less frequently discussed was nature of anomaly and other testing options. (3) Genetic counselors provided too detailed of information which was overwhelming and was not relatable to the participants
  1. AFP positive alpha-fetoprotein, CVS chorionic villus sampling, Amnio amniocentesis, NIPT  non-invasive prenatal testing