Prenatal Diagnosis Survey

The California Down Syndrome Advocacy Coalition is working on a plan to reach out to medical practitioners who are delivering prenatal diagnoses of Down syndrome. We want to ensure that they have accurate, up-to-date information about Down syndrome and the supports and services available to provide to their families. We would especially like to focus on providers who may not currently be delivering diagnoses to families in an informative and supportive manner. If you had a prenatal diagnosis, please take a moment to complete this survey to help us target our efforts. Thank you!

Question Title

* 1. What year did you receive your prenatal diagnosis of Down syndrome?

Question Title

* 2. What is your zip code?

Question Title

* 3. Who delivered your diagnosis?

Geneticist or genetic counselor

Obstetrician

Pediatrician

Other (please specify)

Question Title

* 4. Was your prenatal testing done through the California Prenatal Screening Program?

Yes

Don't know/don't remember

Question Title

* 5. Did the provider explain to you that the blood test was a screening to provide a likelihood of chromosomal abnormality (such as Down syndrome) and that definitive diagnosis could only be done with further diagnostic testing?

Yes

Don't know/don't remember

Question Title

* 6. When you received your prenatal testing results, do you feel the experience was:

Very positive - I felt supported and informed

Somewhat positive

Neither positive nor negative

Somewhat negative

Very negative - I did not feel supported or informed

If you would like to share details about why you chose to answer as you did, please do so here.

Question Title

* 7. Did you feel pressured by the provider to make a particular decision regarding your pregnancy (whether continuing the pregnancy or terminating)?

Yes

Please feel free to share any comments you might have on this question.

Question Title

* 8. Were you given up-to-date materials about Down syndrome?

Yes, the materials were up to date.

I was given materials, but they were outdated and/or not helpful.

I wasn't given any materials.

Please enter any comments you have about the materials you did or didn't receive.

Question Title

* 9. Where did you get up-to-date information about Down syndrome? (Check all that apply)

From my healthcare provider

From a friend, acquaintance, or family member

From the internet

If you gathered your information from the internet, please share the names of any websites or resources you found helpful.

Question Title

* 1. What year did you receive your prenatal diagnosis of Down syndrome?

Question Title

* 2. What is your zip code?

Question Title

* 3. Who delivered your diagnosis?

Question Title

* 4. Was your prenatal testing done through the California Prenatal Screening Program?

Question Title

* 5. Did the provider explain to you that the blood test was a screening to provide a likelihood of chromosomal abnormality (such as Down syndrome) and that definitive diagnosis could only be done with further diagnostic testing?

Question Title

* 6. When you received your prenatal testing results, do you feel the experience was:

Question Title

* 7. Did you feel pressured by the provider to make a particular decision regarding your pregnancy (whether continuing the pregnancy or terminating)?

Question Title

* 8. Were you given up-to-date materials about Down syndrome?

Question Title

* 9. Where did you get up-to-date information about Down syndrome? (Check all that apply)

Question Title

* 10. If you could tell the person who delivered your diagnosis one thing, what would you like to tell them?