Abstract
The option of surgical fetal intervention (SFI) for the treatment of fetal anomalies is relatively new. It is generally recommended for anatomic problems that cause ongoing damage to either the developing fetus or the mother. It is important that parents considering SFI receive counseling from a medical professional before making a decision; prenatal genetic counselors are in an ideal position to do this. This study was designed to assess prenatal genetic counselors’ current knowledge, experience, and comfort level with SFI, and to compare two groups of counselors: those who work in a fetal intervention setting and those who do not. We recruited prenatal genetic counselors through the National Society of Genetic Counselors (NSGC) Listserv who had a minimum of one year of clinical experience and saw patients at least eight hours per week to take a quantitative survey. The survey consisted of multiple choice, Likert scale, and open-ended questions. We collected the survey data in SPSS and completed ANOVA and correlation analysis. We received 82 completed surveys: 28 from fetal intervention counselors and 54 from general prenatal counselors. All respondents were aware of SFI and 84% reported experience counseling for SFI. However, we found a wide range of knowledge levels from questions on details about the surgeries and the use of SFI for specific fetal anomalies. Those counselors who worked in a fetal intervention setting had significantly higher overall knowledge and comfort scores, but not experience scores. We found that 61.3% of respondents first learned about SFI in their genetic counseling training, but 41.5% felt their program did not prepare them well to counsel for it. Our findings indicate that there is a need for genetic counseling programs to increase the amount of time they spend teaching about SFI. It also indicates a need for educational materials and learning opportunities for practicing genetic counselors.