NÚMERO DE CUOTAS
7.11 Análisis de la Competencia
Patients are faced with new decisions as NIPT is integrated into prenatal testing. This study discussed the top five factors most frequently rated as important by
participants about their prenatal testing decision and identified three NIPT-selection factors. Participants tended to want testing to be prepared if the baby had a disability, to avoid the risk of miscarriage, to be reassured the baby was unaffected, to obtain fetal genetic information as early as possible, and to have a test that provides more accurate results than other tests. Participants who selected NIPT were significantly more likely to want to obtain fetal genetic information as early as possible, to have a test that provides more accurate information than other tests, and to be prepared if the baby had a disability. While every patient should be counseled as a unique individual, the results from this study are observations that may help healthcare providers better understand patient perspective. This study reveals five factors important to patient decision-making
regarding prenatal testing; of these, three factors (obtaining genetic information about the fetus as early as possible, having a test that provides more accurate information than other tests, and being prepared if the baby had a disability) were significantly influential in patient selection of NIPT.
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Appendices
Appendix A: Patient Survey
Dear patient,
Thank you for your interest in our research study. The purpose of our research is to examine how women make decisions regarding prenatal testing. This survey should take about 10 minutes to complete, and it may be returned to your genetic counselor or mailed in the return envelope provided. Any questions or concerns regarding this research may be directed to Kim Hamann, principle investigator, at (859) 803-3437 or Janice Edwards, project advisor, at (803) 545-5706. Questions about rights as a research participant may be directed to the Office of Research Compliance at the University of South Carolina at (803) 777-7095 or the Office of Research Integrity at the Medical University of South Carolina at (843) 792-4148.
Participation is voluntary and confidential. You may skip any questions you do not want to answer. Your genetic counselor will complete a short data collection form about your testing options and preferences.
The questions in this survey often reference “your decision”. You might have decided:
To have a specific prenatal test
Not to have more prenatal testing
Or, you might not have decided yet
Whatever choice you make is the right one for you and your genetic counselor supports your decision. Please reflect on your decision-making process in the following questions:
Reflecting on your decision…
1. Before you saw the genetic counselor, did you have an idea of what your decision would be?
a. Yes
b. No (If you answer no to Question #1, please skip to question #3.) 2. Did your decision change during genetic counseling?
a. Yes
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3. Which resource provided the most information to make your decision?
a. Internet b. Genetic counselor c. Family/friend d. General physician e. OB/GYN f. Partner g. Other____________________________________________________ h. Not applicable
4. Which resource was most helpful in making your decision?
a. Internet b. Genetic counselor c. Family/friend d. General physician e. OB/GYN f. Partner g. Other__________________________________________________ h. Not applicable
5. When you were making your decision, did you consider any other options? If so, please circle all that apply.
a. First trimester screening
b. CVS
c. Non-invasive prenatal testing
d. Multiple marker screening
e. Amniocentesis
f. Other _________________________________
g. Not applicable
Considering your decision-making process…
Please consider the following statements and rate their importance to your decision as you were presented different testing options, where 1 is very important and 4 is very unimportant:
6. Whether or not my insurance company would pay for the test was an important consideration
1 2 3 4
Very important Very unimportant
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7. The cost of the test was an important consideration
1 2 3 4
8. I want to obtain test results before I tell others I am pregnant
1 2 3 4
9. I wish to know nothing about the genetic makeup of the baby
1 2 3 4
10.I want to be prepared if the baby had a disability
1 2 3 4
11.I want to avoid the risk of miscarriage associated with some tests
1 2 3 4
12.I want to obtain genetic information about the pregnancy as early as possible
1 2 3 4
13.Other factors that were important to your decision may be listed below
__________________________________________________________________
1 2 3 4
Please consider the following statements and rate their relevance to your decision as you were presented different testing options, where 1 is very relevant and 4 is very irrelevant:
14.I had a positive screening test and am concerned that a chromosome condition may be present
1 2 3 4
15.I would consider pregnancy termination if a chromosome condition is present
1 2 3 4
16.I chose my decision because this test provides more accurate information than other tests
1 2 3 4
17.I chose my decision because this test provides results in a shorter time span than other tests
1 2 3 4
Very relevant Very irrelevant
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18.My OB/GYN suggested this decision, which heavily influenced my decision
1 2 3 4
19.My general physician suggested this decision, which heavily influenced my decision
1 2 3 4
20.My partner suggested this decision, which heavily influenced my decision
1 2 3 4
21.Someone else suggested this decision, which heavily influenced my decision
1 2 3 4
22.I would not consider pregnancy termination regardless of test results
1 2 3 4
23.I hope to learn the baby does not have any genetic conditions
1 2 3 4
24.Other____________________________________________________________
1 2 3 4
A couple more questions about you…
1. How old will you be at the expected due date? ________________ 2. How many weeks pregnant are you? ______________________ 3. Please list your insurance provider. _______________________ 4. Please estimate your annual household income
a. Below $20,000
b. $20,000-$50,000
c. $50,000-$80,000
d. $80,000-$110,000
e. Above $110,000
5. What is your highest completed level of education?
a. Less than high school
b. High school/GED
c. Associate’s degree
d. Master’s degree
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A Final Question
If there are any thoughts or comments about your decision-making process that you would like to add, please do so in the space below:
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Appendix B: Genetic Counselor Data Collection Form Please answer the following in regards to your patient…
1. Which of the following indications prompted the patient’s visit to genetic counseling? (Circle all that apply.)
a. Maternal age greater than 35
b. First trimester screening was positive for trisomy 21, 18, or 13
c. Second trimester screening was positive for trisomy 21 or 18
d. Abnormal ultrasound findings
e. Family history of
_________________________________________________
f. Other
__________________________________________________________ 2. The gestational age of the patient was ________ weeks at the time of genetic
counseling.
3. Which of the following procedures was offered to the patient during this session? (Circle all that apply.)
a. First trimester screening
b. CVS
c. Non-invasive prenatal testing
d. Multiple marker screening
e. Amniocentesis
f. Other
___________________________________________________________ 4. Which of the following has the patient chosen at this time? Only select the
method she is currently pursuing. (Do not select a screening test if she has
already had one for this pregnancy.)
a. First trimester screening
b. CVS
c. Non-invasive prenatal testing
d. Multiple marker screening
e. Amniocentesis
f. Has decided not to pursue any testing
g. Has not decided
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Appendix C: Statistical Analysis Results
Table C.1 Factors Influencing NIPT Selection
Indication χ2 df n p-value Advanced Maternal Age 0.868 1 105 0.351 Positive First Trimester Screen 0.837 1 105 0.360 Positive Second Trimester Screen 0.072 1 105 0.788 Abnormal Ultrasound Results 0.003 1 105 0.954 Family History of Genetic Condition 0.041 1 105 0.840 Other 1.31 1 104 0.252
Testing Options χ2 df n p-value
First Trimester Screening 0.076 1 95 0.783 CVS 4.16 1 95 0.042 NIPT 0.022 1 95 0.883 MMS 2.68 1 95 0.102 Aminocentesis 2.99 1 95 0.084 Other 0.040 1 95 0.841 Not Applicable 0.455 1 95 0.500
Most Information χ2 df n p-value
Internet 0.207 1 102 0.649 Genetic Counselor 0.660 1 102 0.416 Family/Friend 0.119 1 102 0.730 General Physician 0.441 1 102 0.507