Global survey on obstetricians’ perceptions of counselling and decision‑making in pregnancies with high risk or confirmed trisomy 21

Participants information sheet

First, we thank you for your interest in participating in this study.

We invite you to participate in a research on the perceptions of health staff involved in the antenatal diagnosis (obstetricians / gynaecologists / maternal-fetal medicine physicians / midwives), on how they communicate the diagnosis of Down Syndrome to mothers, and what resources they have available to provide this information.

Secondly, we want to analyse the differences in the care process between countries, based on the sociodemographic index (SDI).

The study has been approved by the Research Ethics Committee of the University of Navarra (Spain).

Before you decide if you want to participate in this study, it is important that you understand why this research is interesting, what your participation will involve, how your information will be used.

Please take the time to carefully read the information provided below.

What/Why is the reason for the study? we want to know more about the antenatal management of pregnancies with high risk or confirmed trisomy 21. We know that the feedback provided by antenatal teams will have a decisive impact on the parents' decision-making, and on this topic, we have little available literature.

How will the study be done? Using a questionnaire specifically designed by the researchers and validated following the Delphi methodology.

Who can participate? This aims to be GLOBAL research, and all obstetrician related to the care of pregnancies are welcome to answer the questionnaire. Do not hesitate to share this survey with your colleagues

You should know that your participation in this study is voluntary.

Once you answer our questionnaire, since your answer is not identifiable, it will not be possible to delete it.

Your participation in the study is limited to answering the questionnaire. We do not collect the IP (internet protocol address) from which you reply.

No type of financial compensation is foreseen during the study.

Financing: This study does not have any external financing.

1.Before we start, do you normally care for mothers during pregnancy as an obstetrician-gynaecologist, maternal-fetal medicine physician or midwife?(Required.)

Yes

3.Are you?(Required.)

Female

Male

I prefer not to answer

4.Your age is…Add just a number, please(Required.)

5.Are you a training doctor in obstetrics or gynaecology?(Required.)

Yes

6.Are you a midwife in training?(Required.)

Yes

7.For how many years have you been working as a specialist?(Required.)

Less than 10 years

Between 10 and 20 years

More than 20 years

8.In which country is your hospital located?(Required.)

10.How would you classify the level of care of your obstetric unit?(Required.)

Level 1. Basic care.

Level 2. Specialty care.

Level 3. Subspecialty care.

Level 4. Regional perinatal health.

11.How would you describe your main current professional activity?(Required.)

I work for a public hospital / medical centre

I work for a private hospital / medical centre

I work in both public and private hospitals / medical centre

12.Do you have any teaching activities associated with your obstetric clinical practice? (More than one answer is possible).(Required.)

I teach in the Medicine degree program

I teach in the Nursing degree program

I teach in the Midwifery degree program

I teach in the Genetics degree program

I do not have any teaching responsibility

13.In your daily clinical practice, do you have the responsibility of training doctors in obstetrics/gynaecology?(Required.)

Yes

14.In your daily clinical practice, do you have the responsibility of training midwives?(Required.)

Yes

15.Do you have any relatives or close friends with Down syndrome?(Required.)

Yes

16.Do you have any relatives or close friends with a congenital malformation since childhood?(Required.)

Yes

17.Before suggesting screening tests, do you check if the patient knows what Down syndrome is?(Required.)

Yes

Sometimes

18.Which of the following first-trimester screening tests are you most likely to offer? (You may select one or more options)(Required.)

Maternal serum screening (free β-hCG and PAPP-A)

NT ultrasonography

Combined screening (NT and maternal serum screening)

Non-invasive prenatal test

I do not offer these screening tests

I cannot offer these screening tests in my clinical environment

Other (please specify)

19.Which of the following second-trimester screening tests are you most likely to offer? (You may select one or more options)(Required.)

Quad screen (MSAFP, hCG, unconjugated estriol, inhibin-A)

Triple screen (MSAFP, hCG, unconjugated estriol)

Double screen (MSAFP and hCG)

Integrated first- and second-trimester serum screening

Non-invasive prenatal test

I do not offer these screening tests

I cannot offer these screening tests in my clinical environment

Other (please specify)

20.You routinely offer amniocentesis…:(Required.)

In cases where the combined first trimester screening is high risk (> 1/250)

In cases where the combined first trimester screening is high risk (> 1/10)

In cases of advanced maternal age

In cases of high-risk non-invasive prenatal testing

To all patients

Do not offer the procedure routinely

Other (please specify)

21.You personally perform amniocentesis…(Required.)

On singleton pregnancies

On singleton and multiple pregnancies

I do not perform amniocentesis

22.How many amniocentesis did you perform in the past year? (Add a number) (Add 0 if you do not perform amniocentesis)(Required.)

23.You routinely offer chorionic villus sampling…:(Required.)

In all pregnancies at elevated risk for any genetic abnormality, including advanced maternal age

To all patients of advanced maternal age

To all patients

Do not offer the procedure routinely

24.You personally perform chorionic villus sampling …:(Required.)

On singleton pregnancies

On singleton and multiple pregnancies

I do not perform chorionic villus sampling

25.How many chorionic villus sampling did you perform in the past year? (Add a number) (Add 0 if you do not perform chorionic villus sampling)(Required.)

26.If the combined first-trimester screening test shows an intermediate or high risk of trisomy 21, do you explain what the syndrome is?(Required.)

Yes

Sometimes

27.When a mother pursues a prenatal screen or diagnostic test for Down syndrome, which of the following best describes your typical practice:(Required.)

At the time of ordering the test, we set up a future time to discuss the result.

When the results come back, I then call her by phone with the results.

When the results come back, I send her the results electronically through our hospital’s patient messaging system.

When the results come back, I ask my staff to call her to set up an in-person meeting to discuss the results.

Low-risk results are given over the telephone, but intermediate or high-risk results require an in-person appointment.

Other (please specify)

28.When you disclose the results of the prenatal testing, which of the following best describes your typical practices?(Required.)

I disclose the results to the mother alone.

I disclose the results to the mother and father together.

I disclose the results to whomever the mother invites to join the discussion.

Other (please specify)

29.When you inform a mother that you are certain that the foetus has or may have trisomy 21, which of the following best describes your typical practice)?(Required.)

After saying hello, I first acknowledge that I am sorry to deliver some bad/difficult news.

After saying hello, I just state the factual results of the screen or diagnostic test.

After saying hello, I state that I have “some unfortunate news.”

After saying hello, I usually congratulate her on her baby.

Other

30.After receiving a high risk or positive confirmation test for trisomy 21, which of the following best describes your typical practice?(Required.)

I always provide the contact information of a local Down syndrome advocacy organization.

I offer the contact information of a local Down syndrome advocacy organization, if the mother is interested.

I do not have any parents’ association to which I can refer

I do not usually offer the contact information of a local Down syndrome advocacy organization until after a parent decides to continue the pregnancy.

Other (please specify)

31.Do you consider that when you offer amniocentesis to your pregnant patients, at high risk of having a fetus with trisomy 21, that the baby may in fact not have the trisomy?(Required.)

Yes

Unsure

32.After informing the mother about the high risk or confirmation of the diagnosis that the fetus has trisomy 21, how often do you think the mother comes with a clear idea of termination of pregnancy and does not want to hear information about Down syndrome?(Required.)

33.After receiving a high-risk diagnosis or confirmation of trisomy 21, how frequently do you generally observe that the mother is supported by her family/partner?(Required.)

34.Is voluntary termination of pregnancy when a fetus has a trisomy 21 an option in the country where you work as an obstetrician?(Required.)

Yes

Other (please specify)

35.After you detect that your patient’s fetus has Down syndrome, which of the following most often described your practice?(Required.)

I urge the parents to continue the pregnancy.

I emphasize the positive aspects of Down syndrome so that the parents will favour carrying the pregnancy to term.

I try to be as unbiased as possible with their pregnancy options.

I emphases the negative aspects of Down syndrome so that the parents will favour termination of the pregnancy.

I urge parents to terminate the pregnancy.

36.How do you think that quality of life is for a child or adult with Down syndrome and his/her family is (regardless of associated malformations)?(Required.)

38.Do you feel pressured by your healthcare environment to recommend voluntary termination of pregnancy with a fetus affected by trisomy 21?(Required.)

Yes

Sometimes

39.Do you feel pressured by your political/social environment to recommend voluntary termination of pregnancy with a fetus affected by trisomy 21?(Required.)

Yes

Sometimes

40.Do you offer psychological support services to your pregnant mothers with high risk or confirmed trisomy 21 who wish to terminate the pregnancy?(Required.)

Yes

I don´t have that service available in my centre

41.Do you consider what the quality of the emotional support services offered to your pregnant mothers with high risk or confirmed trisomy 21 is?(Required.)

42.Do you feel that terminating a pregnancy because of a diagnosis of Down syndrome constitutes discrimination against people with disabilities?(Required.)

Yes

I do not know

43.If you practice a religion, do you believe that it influences in any way your healthcare management of an antenatal high-risk or confirmed case of trisomy 21?(Required.)

Yes, I believe that my religion/spirituality has an impact on my management

I am a religious/spiritual person, but this has no impact on my management

I am not a religious/spiritual person

Other (please specify)

44.How would you rate your residency training regarding prenatal screening and diagnosis of fetal aneuploidy?(Required.)

45.How qualified do you feel yourself to manage patients in the area of general prenatal genetic counselling?

Not qualified

Somewhat qualified

Well qualified

46.How qualified do you feel yourself to manage patients at elevated risk of aneuploidy counselling?(Required.)

Not qualified

Somewhat qualified

Well qualified

47.How qualified do you feel yourself to manage patients with a positive screening for fetal aneuploidy counselling?(Required.)

Not qualified

Somewhat qualified

Well qualified

Thank you for taking time to provide expert feedback on this important survey of obstetric/gynecology practices.

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