To our knowledge, this is the first study to explore patient interest in and comfort with discussing a personal and/or family history of mental illness with a genetic
counselor during prenatal genetic counseling. The majority of participants expressed interest in and comfort with discussing mental illness with a genetic counselor regardless of the presence of a family history. The absence or presence of depressive symptoms in the prenatal period did not dictate interest level either. Genetic counselors who practice in prenatal genetic counseling should routinely incorporate asking about mental illness while taking the family history and be prepared to discuss mental health topics (i.e. etiology, recurrence risk, postpartum depression) to those who have a personal and/or family history or with those who express interest. Replication of this study in other prenatal genetic counseling clinics or other genetic counseling specialties is warranted to provide further support to these claims.
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APPENDIX A: QUESTIONNAIRE MATERIALS
My name is Sarah Nimrichter and I am a genetic counseling student in the University of South Carolina’s Genetic Counseling Graduate Program. You are being invited to participate in a study of what information you would be interested in receiving from a genetic counselor in a prenatal visit.
Today, you met with a prenatal genetic counselor to discuss First Trimester Screening, a screen offered to all pregnant women. During your appointment, the genetic counselor took a family history, asking detailed questions about medical diagnoses and healthcare conditions in your family. This information guides the genetic counselor as to what medical conditions you may benefit from discussing more as it relates to genetics.
If you decide to participate, this brief survey will take 5-10 minutes of your time. Most of the survey revolves around your interest and comfort level in talking about mental health conditions with a genetic counselor. You may be uncomfortable answering some of the questions. You do not have to answer any of the questions that make you feel uncomfortable. By beginning and submitting this survey, you are agreeing to be a participant.
All responses gathered from the questionnaire will be kept anonymous and confidential. The results of this study may be published or presented at academic meetings; however, participants will not be identified. Your participation in this research is voluntary.
We will be happy to answer any questions you have about the study. You may contact me at (803) 545-5775 and [email protected] or my faculty advisor, Vicki Vincent at (803) 545-5727 and [email protected] if you have study related questions or problems. If you have any questions about your rights as a research participant, you may contact the Office of Research Compliance at Palmetto Health at 803-434-2884.
Thank you for your consideration. If you would like to participate, please type the following link to complete the questionnaire online (https://surveymonkey.com/r/USCgcsurvey) or fill out the provided paper copy. When you are done, submit the online questionnaire or return the completed paper copy to the box located at the checkout window in the USC OB/GYN suite 106 (ultrasound suite).
Best Wishes, Sarah Nimrichter (803) 545-5775
For questions 1 to 4, rank your level of interest in discussing the following conditions with a genetic counselor, with 5 being very interested and 1 being not at all interested.
Condition 5 – Very Interested 4 – Somewhat Interested 3 – Neutral 2 – Somewhat Not Interested 1 – Not at all interested 1) Single Gene Conditions (cystic fibrosis, spinal muscular atrophy, sickle cell disease) 2) Chromosome Conditions (Down syndrome, trisomy 18, trisomy 13) 3) Isolated Birth defects (Neural tube defects, cleft lip/palate, heart defects) 4) Mental Illness (schizophrenia, bipolar disorder, anxiety disorders, depression)
For questions 5 to 8, is there a history of the following conditions in either the father of the baby’s family or your family?
5) Single Gene Conditions (e.g. Cystic fibrosis, spinal muscular atrophy, sickle cell disease, etc.) Y or N
6) Chromosome Conditions (e.g. Down syndrome, Trisomy 18, Trisomy 13) Y or N 7) Isolated Birth Defects (Neural tube defects, cleft lip/palate, heart defects) Y or N 8) Mental Illness (schizophrenia, bipolar disorder, anxiety disorders, depression) Y or N
9) Did your genetic counselor ask you directly about a personal or family history of mental illness?
10)If you answered yes to question 9, how did you feel about being asked about a personal or family history of mental illness?
5 – very comfortable 4 – somewhat comfortable 3 – neutral
2 – somewhat uncomfortable 1 – very uncomfortable
11)If you answered yes to question 9, did you have a discussion about mental illness with the genetic counselor? Y or N (If no, skip to question 16)
If you answered yes to the question 11 “did you have a discussion about mental illness with the genetic counselor” please answer questions 12 to 14:
12)What mental health topic(s) did the genetic counselor discuss? (Select all that apply) a) Factors that contribute to the development of mental illness
b) Chance for family members to develop mental illness
c) Things you can do to protect your mental health (e.g. exercise, adequate sleep, etc.)
d) Post-partum depression (depression after having a baby) e) Resources (e.g. information about mental health professionals) f) Genetic Testing
g) Other: ____________________________________________
13)Were there topics regarding mental health conditions you wish the genetic counselor would have covered? (Select all that apply)
a) Factors that contribute to the development of mental illness b) Chance for family members to develop mental illness
c) Things you can do to protect your mental health (e.g. exercise, adequate sleep, etc.)
d) Post-partum depression (depression after having a baby) e) Resources (e.g. information about mental health professionals) f) Genetic Testing
g) Other:_______________________________________________ h) No, there were no other topics I would have liked covered
14)How comfortable were you discussing these mental health topics with your genetic counselor? 5 – very comfortable 4 – somewhat comfortable 3 – neutral 2 – somewhat uncomfortable 1 – very uncomfortable
If you answered NO to question 9 “did your genetic counselor ask you directly about personal or family history of mental illness” please answer questions 15 and 16:
15)How would you have felt if your genetic counselor asked you directly about a personal or family history of mental illness?
5 – very comfortable 4 – somewhat comfortable
3 – neither comfortable or uncomfortable 2 – somewhat uncomfortable
1 – very uncomfortable
16)Please select the topics related to mental illness that you would have liked to have discussed with your genetic counselor (select all that apply):
a) Factors that contribute to the development of mental illness b) Chance for family members to develop mental illness
c) Things you can do to protect your mental health (e.g. exercise, adequate sleep, etc.)
d) Post-partum depression (depression after having a baby) e) Resources (e.g. information about mental health professionals) f) Genetic Testing
g) Not applicable (e.g. no family or personal history of mental illness)
Please complete the following ten items by checking the answer that comes closest to how you have felt in the past 7 days, not just today.
17)I have been able to laugh and see the funny side of things. □ As much as I always could
□ Not quite so much now □ Definitely not so much now □ Not at all
18)I have looked forward with enjoyment to things. □ As much as I ever did
□ Rather less than I used to □ Definitely less than I used to □ Hardly at all
19)I have blamed myself unnecessarily when things went wrong. □ Yes, most of the time
□ Yes, some of the time □ Not very often □ No, not at all