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doi: 10.1111/hex.

12200

Factors that affect the decision to undergo


amniocentesis in women with normal Down
syndrome screening results: it is all about the age
Julia Grinshpun-Cohen MSc,* Talya Miron-Shatz PhD, Liat Ries-Levavi PhD
and Elon Pras MD**
*Doctoral Candidate, Laboratory Manager, **Head, The Danek Gertner Institute of Human Genetics, Sheba Medical Center,
Tel Hashomer, Doctoral Candidate, Associate Professor, Sakler Faculty of Medicine, Tel Aviv University, Tel Aviv, Associ-
ate Professor, Center for Medical Decision Making, Ono Academic College, Kiryat Ono, Israel and Senior Fellow, Center for
Medicine in the Public Interest, New York, NY, USA

Abstract
Correspondence Background Risk for foetal Down syndrome (DS) increases as
Julia Grinshpun-Cohen
The Danek Gertner Institute of Human
maternal age increases. Non-invasive screening (maternal serum
Genetics Sheba Medical Center triple test) for DS is routinely oered to pregnant women to pro-
Tel Hashomer, Ramat Gan, 52621 vide risk estimates and suggest invasive amniocentesis for denitive
Israel
pre-natal diagnosis to high-risk women.
E-mail: juliagr1@post.tau.ac.il
Accepted for publication Objective We examined womens decision process with regard to
31 March 2014 pre-natal screening, and specically, the degree to which they take
Keywords: advanced maternal age, into account triple serum screening results when considering
amniocentesis, decision making, whether or not to undergo amniocentesis.
Down syndrome, screening, statistical
risk estimates Design Semi-structured phone interviews were conducted to assess
recall of DS screening results, understanding of risk estimates and
their eect on womens decision whether to undergo amniocente-
sis. The study included 60 pregnant Israeli women (half younger
than 35 and half advanced maternal age AMA), with normal DS
screening results and no known ultrasound abnormalities.
Results Age appeared to determine the decision process. The vast
majority of AMA women had amniocentesis, many of them before
receiving their DS screening results. Most AMA participants knew
that their risk estimate was normal, but still considered themselves
at high risk due to their age. Procedure-related risk (miscarriage)
and other factors only had a minor eect on their decision. A minor-
ity of younger women had amniocentesis. Younger women men-
tioned procedure-related risk and having normal screening results as
the main factors aecting their decision not to have amniocentesis.
Conclusion Age 35 is an anchor for the pre-determination regard-
ing performing or avoiding amniocentesis. AMA women mention
age as their main reason to have amniocentesis and considered it
an independent risk factor.

2306 2014 John Wiley & Sons Ltd


Health Expectations, 18, pp.23062317
Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al. 2307

or not to undergo amniocentesis that provides


Introduction
a denitive diagnosis for DS. Risk assessment
Statistical risk estimates are important in vari- is based on measuring the amount of several
ous life situations. They also comprise a major chemicals in the mothers blood and a statisti-
component of the genetic counselling process cal model calculating the risk given her age at
which integrates the interpretation of family the end of pregnancy. Risk gures are usually
and medical histories to assess the chance of presented in a probabilistic 1 : XXX format
disease occurrence or recurrence.1 with a range of 1 : 11 : 20 000. A cut-o is
As genetic counsellors strive to provide pre- used to distinguish normal (low-risk) from
cise information and assist in the decision- abnormal (high-risk) results. In Israel, where
making process of the counselees, an eort is the present study took place, the Ministry of
made to provide the most accurate numerical Health sets the cut-o at 1 : 380 so that if the
risk estimates, under the premise that this result indicates a higher risk, amniocentesis is
information is a signicant factor in the nal recommended and funded.10,11 Additionally,
decision. Yet, several studies have shown that when the woman is advanced maternal age
risk information is interpreted by counselees in (AMA) or if various ultrasound abnormalities
a personal manner and that their decisions are are detected, amniocentesis is government
related to their subjective perceptions of risks funded regardless of the screening test results.12
rather than the objective risk.24 People have In Israel, all women who undergo the screening
a diculty interpreting risk estimates, espe- for DS receive the test result that states the
cially when the magnitude of the risk is small.5 basic risk of DS due to age alone and the
Probabilities, by their very nature, involve an adjusted risk according to the test. It is widely
element of uncertainty, yet people tend to believed by geneticists and genetic counsellors
interpret them in a binary or in a more abso- that this information facilitates the decision of
lute manner as if something will either happen whether amniocentesis should be per-
or not happen.6 Further, work on patients formed.13,14 However, Lawson found that neg-
recall of their own risk estimates has demon- ative perceptions of having a child with DS
strated that patients are often inaccurate and had a more signicant inuence on decisions
that individuals coming from families with a made than the numeric probability for the out-
history of a disease tend to believe they are in come.15
greater risk than was assigned to them by the Compared with other western countries,
doctor, based on their genetics.7 Israeli women tend to perform many tests dur-
The risk for foetal Down syndrome (DS) ing pregnancy16 including genetic carrier
increases with the increase in maternal age, screening, ultrasound scans and biochemical
from 1 : 1600 at age 20 to 1 : 30 at age 45. At screening for DS. Based on the latest survey of
age 35, the risk is approximately 1 : 350.8 the Israeli Ministry of Health, 64% of preg-
Non-invasive screening (maternal serum triple nant Jewish AMA women had triple test
test) for DS is routinely oered to pregnant screening and 47% had amniocentesis.17 Of
women with the purpose of providing risk esti- Jewish women younger than 35, 61% had the
mates and oering invasive pre-natal diagnosis triple test screening and 10% had amniocente-
(usually amniocentesis) to appropriate sub- sis. Israeli Jewish population is very diverse
groups of women considered to be at higher with regard to religiosity. One of the main fac-
risk. Screening for DS risk, performed by anal- tors aecting the decision regarding amniocen-
ysing markers in maternal serum, is recom- tesis is religiosity probably as religious women
mended to every pregnant woman in the US, do not accept the option of pregnancy termina-
Israel and many European countries. The main tion for a foetus with DS. Among secular
goal of the test is to assess the risk of foetal Jewish women of all ages, 89% had triple test
DS,9 which should inform the decision whether screening and 32% had amniocentesis. Secular

2014 John Wiley & Sons Ltd


Health Expectations, 18, pp.23062317
2308 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.

women over 35 were 4.8 times more likely to conjunction with other factors, when making
have amniocentesis than ultraorthodox women. their decision about amniocentesis.
Amniocentesis is associated with a risk of
miscarriage. The exact magnitude of this risk is
Methods
cited dierently in dierent places, ranging
from 1 : 100 to 1 : 1600,1820 although in the Approval for this research was obtained from
ocial Israeli consent form that is used in all the Sheba Medical Center medical ethics com-
medical facilities, the risk is stated as 1 : 200. mittee. Names and phone numbers of women
Thus, the decision to perform the procedure who had normal (low-risk) results of second
without a medical indication can lead to signi- trimester triple test screening performed at the
cant negative consequences. Genetic Institute of the Sheba Medical Center
A question that arises in this context is what were obtained. A written explanation about the
factors aect the decision regarding the screen- research and a possible future phone interview
ing test and amniocentesis. A study performed was sent by mail to all prospective partici-
in Israel found that the use of amniocentesis pants.
by low-risk women was associated with older Women who had medical indications for
age, having more information and being under amniocentesis (ultrasound ndings, family his-
more social pressure.21 In a study carried out tory of DS or high statistical risk estimate on
before screening for DS was available, French rst trimester screening) were excluded from
et al.22 found that in a sample of highly edu- the sample. We also excluded those who did
cated women, there was no relationship not speak uent Hebrew. Approximately,
between knowledge and the decision to obtain 2 months after they received their screening
amniocentesis. It was previously noted that results, women were contacted by phone and
decision by AMA patients regarding amniocen- asked for their consent to participate in the
tesis may not always correlate clinically with semi-structured interview. The interview was
DS screening results.23 Researchers have found conducted after the decision regarding amnio-
that screening for DS decreased amniocentesis centesis was reached, so as not to inuence the
uptake among AMA women.24,25 Johnson womans decision. There were a total of 311
et al.26 found that AMA women were more eligible participants during the research period.
likely to undergo amniocentesis when their To reach the pre-determined number of 60
screening-based risk was higher than their age- participants, women were randomly selected,
related risk, while Vergani et al.27 indicated and at least one attempt to call each one of
that the key determinant of the choice regard- them was made, until the desired sample size
ing amniocentesis in AMA women was the a of 60 was reached. Six women among the 74
priori opinion of the woman towards the pro- that were reached by phone on the rst
cedure. attempt refused to participate. The main rea-
The main objective of this study was to son was time constrains due to the uninter-
examine both comprehension and use of rupted time slot required to complete the
numeric risk information in medical decision interview.
making. We investigated the understanding Eight additional women were later excluded
and recall of the DS screening results and the due to medical indications for amniocentesis,
way this information aected the decision to which were revealed in the interview. This
undergo amniocentesis with a special emphasis places the response rate to our study at 81%.
on age as a factor in the decision. Specically, Sample size was calculated as to compare the
we examined whether women understand the proportion of women in the below- and above-
statistical risk estimates of DS screening tests AMA groups, respectively, on proportion that
as well as the risk associated with amniocente- undergo amniocentesis (yes/no). A sample of
sis and whether they use this information in 30 in each group would be enough to detect a

2014 John Wiley & Sons Ltd


Health Expectations, 18, pp.23062317
Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al. 2309

large eect at power of 0.80 (P < 0.05, 2-


Results
tailed).28
After verbal consent was obtained, a phone The decision of the patients regarding amnio-
interview that lasted 11.81 min on average centesis is presented in Table 1. While the vast
(with a standard deviation of 4.14 min) was majority of AMA women (86.7%) had amnio-
conducted. All women were interviewed by a centesis, only a small minority of younger
single interviewer (JGC). Overall, 60 women women (6.6%) chose to undergo the procedure.
were interviewed: 30 were under the age of 35 The Pearsons correlation between age (as a
and 30 were over 35, thus considered AMA for continuous variable) and performing amniocen-
government funding purposes. Of the 60 inter- tesis is 0.768 (P < 0.001).
views, 52 were recorded and transcribed. The The average risk of the 28 women who had
remaining eight were analysed based on the amniocentesis was 1 : 5753, vs. 1 : 9888 for the
questionnaire lled during the phone conversa- 32 women who did not have the test. Even
tion. All 60 participants were Jewish. Forty- though this is a statistically signicant dier-
four (73.3%) described themselves as secular, 9 ence (P < 0.05), both risks are in the normal
(15%) as traditional and 4 (6.6%) as religious. range and are much lower than the 1 : 380 cut-
Three women did not answer the question o for high-risk results (P < 0.01). The Pear-
regarding religious beliefs. With regard to edu- sons correlation between risk at the DS screen-
cation, 15 (25%) had high school education, 25 ing test (as a continuous variable) and
(41.6%) had an academic degree, and 18 performing amniocentesis is 0.278 (P < 0.05).
(30%) had a masters or doctoral (MD or PhD) When controlling for risk, the correlation
degree. Two women did not answer the ques- between age and amniocentesis (r = 0.747) is
tion regarding education level. still highly signicant (P < 0.01). However,
Questions included assessment of: when controlling for age, there is no signicant
1. Knowledge and recall of screening test (tri- correlation (r = 0.074) between the risk esti-
ple test) purpose, amniocentesis risk, thresh- mates and amniocentesis. The above correla-
old for abnormal results and own risk tions were calculated for the entire sample,
estimate. regardless of whether or not the woman waited
2. Understanding of screening results. for the triple serum screening results before
3. Whether or not amniocentesis was per- deciding on an amniocentesis. About a third of
formed. the women (17) did not wait to receive the
4. The reasons for performing or declining screening test result before deciding on an
amniocentesis, especially the eect of mater- amniocentesis (see Fig. 1). When only the 43
nal age, family history, and available public women who had waited for screening result
funding. (see below) were included, the signicance of
the above correlations did not change (correla-
The questionnaire is presented as Data S1.
tion for age and amniocentesis controlled for
Statistical analysis was performed using SPSS
risk of 0.642, P < 0.01).
v19.

Table 1 Age, risk and amniocentesis performance: participants characteristics with regards to age, risk estimate and
amniocentesis performance are presented

Sample Young AMA All

Sample size 30 30 60
Average age 29.1 (2335) 37.6 (3542) 33.4
Average risk 1 : 10 866 (1 : 5901 : 20 000) 1 : 5050 (1 : 4101 : 20 000) 1 : 7958
Had amniocentesis (rate) (%) 2 (6.6) 26 (86.7) 28 (46.7)

AMA, advanced maternal age.

2014 John Wiley & Sons Ltd


Health Expectations, 18, pp.23062317
2310 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.

(a) (b)

Figure 1 Flow chart representing


whether women waited for screening
results before deciding on
amniocentesis performance among
advanced maternal age (a) and Young
(b) women.

The Pearsons correlation between education a medical practitioner (doctor or nurse) before
level (a scale of 1 = high school to 4 = PhD or having it. Thus, the majority of women either
MD) and amniocentesis performance is 0.362 (P did not have the test results at their disposal
value 0.05). However, when controlled for age, while deciding on amniocentesis or did not
the very small remaining correlation ( 0.026) is have an explanation regarding the purpose of
negative and not statistically signicant. triple serum screening and its role in determin-
Within the AMA group, the correlation ing whether to have amniocentesis.
between education and amniocentesis uptake
(0.118) is not signicant and is lost when con-
Is the decision affected by accurate recall of
trolled for age.
risk estimates?
The correlation between education level and
recall of screening results was 0.059 (P value At the time of interview, participants were
0.05). Thus, education hardly aected recall. asked to recall the risk estimates for DS and for
The correlation between religiosity (on a scale amniocentesis-related miscarriage. By that time,
of 1 = secular to 4 = orthodox) and amniocen- all women had received their screening results
tesis performance is 0.265 (P value 0.05). (thus had the necessary information to answer)
When controlling for age, this correlation and had reached their nal decision regarding
remains similar ( 0.236), but is no longer statis- amniocentesis. The results presented in Table 2
tically signicant. In any case, of our partici- show that while a relatively small fraction of
pants, only four dened themselves as religious women could accurately recall the risk estimates
(score of 3). for DS and amniocentesis-related miscarriage,
Among the 43 women who had the statistical more women who had amniocentesis accurately
results at the time of the decision regarding recalled the procedure-related risk, while more
amniocentesis, only 17 (40%) said that they women who did not have amniocentesis accu-
received an explanation about the triple test by rately recalled their screening results.

Table 2 Recall of risk estimates and amniocentesis performance: patients (who did, or did not, have amniocentesis) recall of
both Down syndrome (DS) screening risk based on their screening results and amniocentesis-related miscarriage risk
(1 : 200)

Did not
Had have
amniocentesis amniocentesis
(28) (32) All (60)

Can accurately* quote screening result (%) 3 (11) 13 (41) 16 (27)


Recalls result as normal (%) 28 (100) 32 (100) 60 (100)
Can accurately* quote amniocentesis-related risk (%) 12 (43) 6 (19) 18 (30)
Can accurately* quote both the screening result and amniocentesis risk 3 (11) 6 (19) 9 (15)
(%)
Cannot accurately quote either risk (%) 10 (36) 18 (56) 28 (47)

*Among those that could quote any number at all, a response within a 10% range from the actual risk estimate was accepted as accurate.

2014 John Wiley & Sons Ltd


Health Expectations, 18, pp.23062317
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For almost a third of the participants (17), presented as multiple-choice answers). Each
the issue of whether the screening results participant could mention several dierent rea-
aected their amniocentesis decision was irrel- sons. These results are shown in Table 3.
evant as they had amniocentesis before Age is the most signicant factor cited by
receiving their screening results. This means AMA women as a reason to have amniocente-
that the screening results could not have been sis. Next factors are: wanting certainty (as
taken into account when deciding on amnio- opposed to statistical estimates), having per-
centesis. formed amniocentesis in a previous pregnancy
As shown in Table 2, ve of the 28 women and the recommendation of the doctor. The
who had amniocentesis (18%) quoted proce- Young women mentioned procedure-related
dure-related risk as 1 : 1000. This risk estimate risk as the most common reason for not having
is mentioned during counselling at the Sheba amniocentesis, and others are having a normal
Medical Center and appears in the information statistical estimate, doctors recommendation
brochure, but is not written in the consent and age. Age and doctors recommendation
forms that state the risk as 1 : 200. were mentioned by both groups, but as oppo-
site inuences.
Table 4 brings citations from the women as
Is the decision to undergo amniocentesis
pertaining to the most popular reasons they
affected by level of risks?
mentioned for either performing or not per-
When asked whether the risk estimates (risk forming amniocentesis. The citations allow
for DS and procedure-related risk) were impor- hearing the womens voices and their unique
tant for their decision making, ten of the interpretations of the reasons that led them to
Young (33%) and eight of the AMA (27%) test or to refrain from testing.
women replied that they were helpful. Eleven
of these 18 (9 Young and 2 AMA) did not
Hypothetical risk scenarios
have amniocentesis (61%).
Eleven of our 60 participants had risk esti- To evaluate the role of risk estimates in
mates in the highest range, above 1 : 1000 womens decisions, we asked two hypothetical
(1 : 410800). However, only six of them questions regarding predicted behaviour in two
were aware of the result at the time of the risk-level scenarios.
decision. Seven of these 11 women, all of Among the 32 women who did not have
whom were above age 35, had amniocentesis. amniocentesis, 19 (59%) women (16 of them
Two of the six women who waited for their Young) said they would consider having
screening results had amniocentesis. On the amniocentesis at 1 : 100 risk for DS. An
other end of the spectrum, 14 of our 60 par- additional 3 (9%) women (two of them
ticipants had the lowest possible risk estimate Young) said they would maybe have
of 1 : 20 000. Among them, three had amnio- amniocentesis at that risk level. This result
centesis (two were AMA and one was shows that the majority of these women
34 years old). One of these AMA women did would consider a high-risk estimate as
not wait for the result before undergoing important.
amniocentesis. Among the 27 women who had amniocente-
sis, only one (36 years old, 1 : 740 risk for DS)
said that she might have considered not hav-
Factors that influence the decision regarding
ing amniocentesis at a 1 : 10 000 risk for DS.
amniocentesis in AMA and Young women
This shows that the risk level was not a mean-
The 52 transcribed interviews were searched ingful factor in the decision for most women
for factors that the participants mentioned as who decided to have amniocentesis in this
important for their decision (and were not study.

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Table 3 The reasons for having/not having amniocentesis: presented in descending order of popularity (from top to bottom).
The reasons were inferred during the interview not as a multiple-choice or menu-itemed question

Age group AMA AMA Young Young Total


Did not Did not
Had have Had have
amniocentesis amniocentesis amniocentesis amniocentesis
Amniocentesis (number of interviews*) (24) (4) (2) (22)

Age 21 6 27
Procedure risk 3 3 14 20
Doctors recommendation 7 1 9 17
Normal statistical risk estimate 4 11 15
Certainty that foetus is normal 8 2 10
Previous amnio 8 8
Government funding 4 4
Previous children/healthy family 4 4
Abnormal child is worse than miscarriage 3 3
Family/friends 2 1 3
Amnio detects other abnormalities except 1 1 1 3
DS
Having control 2 2
Had exposure to DS 2 2
May not terminate a DS pregnancy 1 1 2
Fear of needles 1 1

AMA, advanced maternal age; DS, Down syndrome.


*Based on the 52 fully transcribed interviews only.

Age and doctors recommendation were mentioned by AMA women as a reason to have amniocentesis and by Young women as a reason
not to have the procedure.

Among the 21 AMA women who mentioned age as a reason for amniocentesis, 14 were asked what that risk was. Only five of them (36%)
could accurately quote that risk.

Had exposure to information about families with Down syndrome.

Our results show that being above age 35


Discussion
had a strong inuence on womens use of the
This study aimed to examine pregnant results to decide whether they would perform
womens decision process with regard to pre- amniocentesis. Thus, low statistical risk for
natal screening, and specically, the degree to DS did not aect the decision to have
which they take into account triple serum amniocentesis for women over 35, who were
screening results when considering whether or likely to undergo amniocentesis regardless of
not to undergo amniocentesis. the results. Notably, the majority of AMA
A recent systematic review29 that attempted participants did not plan to have triple serum
to identify the factors inuencing the uptake of screening or to wait for its results before
invasive pre-natal testing by AMA women has undergoing amniocentesis. AMA women sta-
found that it is dicult to draw rm conclusions ted that age was the most signicant factor
as to the inuential factors. The researchers for their decision to have amniocentesis
looked at external and psychological factors, although most of them did not know the
but did not examine womens subjective risk exact risk associated with their age. Young
assessments or their main reasons for having women stated the risk of amniocentesis as
amniocentesis. Our current study lls this gap as the most signicant reason for avoiding the
we have directly asked our participants about procedure. DS risk was also important for
the factors that aected their decision and the decision about having the procedure for
explored their subjective risk perception. young women.

2014 John Wiley & Sons Ltd


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Table 4 Representative quotes for the most commonly stated reasons

Age group AMA AMA Young Young


Amniocentesis Yes No Yes No

Age* My age was what led me to have I did not have an amnio
the test because of my age
Because of my age we made a (29)
decision to have the test
regardless of the results
Procedure risk Because there is a risk to both I was afraid of the risk I think that the test is
mother and fetus we debated dangerous and its best
whether to have it to avoid it if its
unnecessary
Once I understood that
the procedure has a
risk, even a small one,
I decided not to do it
Doctors recommendation* My doctor referred me for My doctor (screening) result was
amnio anyway because of said that normal
my age I dont *My doctor didnt want
My doctor said that since need to to look at my results
I am 38 it is better to have have the and said that since I
the test than take test am 35 I must have an
unnecessary risks because amnio
the
I asked my doctor, he said that I
dont need it (amniocentesis)
I discussed it with my doctor
and he did not recommend
(amniocentesis)
Normal statistics My result was very good so It was a low risk, thats
I did not have an amnio why I did not have the
I had a risk estimate of amnio
1 : 9400 which is good
Certainty I feel that it is important for me The
to make sure that there is no statistics
problem with the baby, as much wasnt
as currently possible enough
It was Important for me to have for me
certainty regarding birth defects
Previous I had an amnio in all my
Amniocentesis previous pregnancies

AMA, advanced maternal age.


*Two women claimed that they were reprimanded by their doctor for not having amniocentesis in their age.

For our participants, age 35, which is associ- of the AMA women did not take statistical risk
ated with both physician recommendations and estimates into account when deciding about
government funding for amniocentesis, served amniocentesis. Most of our AMA participants
as an anchor in the decision to perform amnio- knew that their risk estimate was normal, but
centesis. While most women could not state still considered themselves at high risk due to
their age-related or screening-based risks, they their age. Other factors, such as procedure-
clearly considered being over 35 years of age related risk, were secondary and had only a
as a determining factor. So much so that most minor eect on the decision.

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2314 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.

Younger women, on the other hand, did as a social norm. It is interesting to explore
state the procedure-related risk and having a whether AMA women would still have amnio-
normal screening result as the two main factors centesis if it was not funded. We did not specif-
aecting their decision not to have amniocente- ically ask this question; however, the women
sis. Even though the majority of the young did not mention the test being free as a reason
women could not recall their screening result, to have it, and young women did not mention
they were four times more likely to accurately cost as a signicant reason not to have the test.
recall it than AMA women. It thus seems that It is also worth mentioning that funding for
the decision process of the young women is amniocentesis for AMA women is available in
more informed than that of the AMA women. many countries.
Several of the AMA women said that in previ- The second contextual factor is the attitude
ous pregnancies, they did not have amniocente- of the medical community towards pre-natal
sis because their screening results were normal, testing for AMA women. It is important to
but their point of view was dierent now that note that the majority of our AMA partici-
they were old. pants had the blood drawn for the triple test
A small minority of AMA women mentioned immediately before having the amniocentesis.
procedure risk, normal risk estimates and the This practice is based on the recommendation
fact that amniocentesis detects other abnormal- of some doctors and geneticists to have the
ities besides DS, as their reasons for action. triple serum test regardless of amniocentesis,
Thus, women choose to undergo amniocentesis as it can detect risk for SmithLemliOpitz
for the certain detection of DS disregarding the syndrome, Xlinked Ichthyosis and other con-
actual risk and other factors. It is possible that ditions (all unrelated to maternal age) by
if a proper explanation about the screening test detecting extremely low levels of estriol
was given, women would still have chosen to (UE3) in maternal blood.30 Five AMA
have the procedure, but would have stated women mentioned this as their main reason
other relevant reasons and have arrived to the to have the triple test. These women empha-
decision in a more informed way, based on bet- sized that the estimated risk for DS was not
ter knowledge and understanding. Previous signicant for them. This timing of the triple
studies that explored this issue did not speci- serum screening suggests that the test is seen
cally compare AMA and younger women; as part of routine pre-natal care and is not
thus, our results provide a unique perspective considered as a decision factor for amniocen-
on the subject. While it was previously found tesis by either the women or their medical
that subjective factors, and not knowledge, are caretakers. Further, most women reported
important for the decision, the dual interpreta- that they did not receive an explanation
tion of age as a high- or low-risk factor is very about the triple test from a medical practi-
important for the understanding of the decision tioner, and some found the information on
process of women with low screening risk for the internet and in the media. It is possible
DS. that lack of discussion and limited under-
Several contextual factors should be consid- standing of the purpose and importance of
ered when evaluating Israeli womens decision the test contributed to the disregard of its
process regarding amniocentesis. The rst is results during decision making. The disregard
the eect of dierential government funding. of a screening test when deciding about a
While young women only receive funding for diagnostic test may be relevant to other med-
amniocentesis if they have abnormal screening ical situations. It is in agreement with the
results or ultrasound ndings, AMA women previously mentioned ndings of Linnenbrin-
have free amniocentesis without any medical ger et al.7 regarding the overestimate of indi-
indication. Our participants appeared to inter- vidual Alzheimer risk despite the results of
pret funding as a medical recommendation and genetic screening.

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The eect of physicians attitudes on the This study has several limitations. The sam-
actions and choices of their patients was previ- ple size was relatively small and not completely
ously explored by Gurmankin et al.31 who representative of the general Israeli population,
found that physicians recommendations can but it does represent a large population of sec-
lead people to make decisions that go against ular, educated, Israeli women who utilize many
what is best and against what they would pre-natal tests.
otherwise prefer. Heckerling et al.32 showed There is a signicant correlation, of medium
that, according to patients, the choice of pre- magnitude, between education and amniocente-
natal test was made entirely or mostly by the sis uptake in our sample of women. However,
physician in 14% of cases and was shared as education is highly correlated with age, age
equally between patient and physician in 37% is confounding this correlation. There is a very
of cases. According to a recent survey, over weak negative correlation between education
60% of Israeli obstetricians would recommend and recall of screening results; thus, this sample
amniocentesis to AMA women with normal being highly educated should not alter our con-
screening results.33 Our results suggest that the clusions as for the signicance of age for the
common attitudes of the medical community decision.
(referred to by our participants as doctors A certain limitation in this study is that the
recommendation) have a signicant eect on women were interviewed 12 months after they
the decisions of individual women. The current have received their screening results and reached
study design could not parse the womens atti- their decision regarding amniocentesis. It is pos-
tudes and actions from the attitudes and sible that the time lag contributed to the rela-
recommendations of their physicians. Further- tively low recall rates of the risk estimates and
more, two of our AMA participants mentioned that at the time of decision, the women had bet-
being reprimanded by their physician for not ter knowledge of their risks. However, the
having amniocentesis, and others mentioned majority of AMA women chose not to wait for
feeling considerable pressure from their envi- their screening results before having amniocen-
ronment to have the procedure. tesis, and others claimed that the risk estimates
It seems plausible that the combination of had no eect on their decision. The small num-
funding that is based on age alone and the rec- ber of the remaining women did somewhat limit
ommendations of many physicians are perceived the statistical power of the comparisons between
by women as an independent risk factor. If the AMA and young women.
policy makers and the medical community insin- We chose to explore the eect of the second
uate that amniocentesis is indicated after age 35, trimester triple marker screen rather than the
it is hard to expect the non-expert women to rst trimester screening or the integrated
make an independent decision. screening that may have higher specicity and
In western countries, a womans informed sensitivity. The triple test is the only test that
choice is considered a basic principle in the was uniformly recommended and funded for
carrying out of pre-natal screening and diagno- all pregnant women at the time of the study.
sis that are presented as oering new reproduc- As most women did not recall their results or
tive choices for women and couples.34 A incorporate them into the decision, we believe
denition of informed choice as adapted from that the eect of other statistical tests would
OConnor and OBrien-Pallas35 is one that is not dier.
based on relevant knowledge, consistent with Future research could further explore the
the decision-makers values and behaviourally decision process of AMA women undergoing
implemented. We show a signicant lack of amniocentesis. One potential direction for
knowledge among our participants, thus cast- doing so is in the context of physician attitudes
ing doubt whether the decision to undergo and recommendations as well as the eect of
amniocentesis is indeed informed. funding policies.

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Health Expectations, 18, pp.23062317
2316 Age is the main factor affecting amniocentesis uptake, J Grinshpun-Cohen et al.

It was previously shown that the use of deci- risk information following genetic counselling for
sion aids can improve informed choice36,37 breast and ovarian cancer. Psychology Health and
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tion of the process among pregnant women in Green R. I know what you told me, but this is
Israel and other places. New technologies, such what I think: perceived risk of Alzheimer disease
as non-invasive testing for foetal trisomy and among individuals who accurately recall their
microarray-based techniques, are being recently genetics-based risk estimate. Genetics in Medicine,
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This research was supported by The Israel 10 Israeli Ministry of Health policy statement, 2007;
Notional Institute of Health Policy Research. 15/2007.
11 Israeli Ministry of Health policy statement, 2013; 6/
2013.
Conflict of interest 12 Israeli Ministry of Health policy statement, 1992;
36/92.
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for Downs syndrome: 7 year experience. Journal of
Medical Screening, 2001; 8: 128131.
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PA. Does labeling prenatal screening test results as
Additional Supporting Information may be
negative or positive aect a womans responses?
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