At least 3% of pregnancies are affected by a fetal anomaly.(1, 2) Screening for fetal anomalies in pregnancy has become a routine part of prenatal care (1 ) and most women choose to terminate a pregnancy if fetal abnormalities are detected. (3) While surgical and medical methods of second-trimester termination are both medically appropriate treatments,(8) they are very different experiences.(8-10) Medical termination involves full emotional participation as the patient experiences labor and delivery, while surgical termination allows for more emotional distancing. (10) Terminating a desired pregnancy is a vulnerable time for women and many report grief and posttraumatic stress symptoms more than a year afterwards.(17, 18) Women often rely heavily on advice from providers when terminating for a fetal anomaly;(18) but with no data regarding patient preferences for these two different methods, providers often recommend a method based on personal beliefs and practices rather than individual patient factors.(19) In fact, there is a strong provider bias toward recommending medical termination with the belief that viewing the fetus helps women grieve and recover.(11) Consequently, women may be inadvertently counseled toward a procedure that is contrary to their emotional needs, thus complicating their grief and delaying recovery. Although access to surgical termination is not uniform across the US, many women are accessing this method (20). The findings from this proposal, therefore, will have broad impact for women in the US who are negotiating the emotional experience of terminating a desired pregnancy.
The specific aims of this proposal are as follows:
Aim 1 : To quantify the proportion of pregnant women diagnosed with a fetal anomaly who terminate their pregnancy and to quantify the proportion of these women who undergo surgical versus medical procedures.
Aim 2 : To modify and test instruments to measure decision satisfaction, grief and coping in women choosing surgical or medical termination for fetal anomaly.
Aim 3 : To describe predictors of decision satisfaction, grief and coping among women undergoing surgical or medical termination for fetal anomaly.
The aims will be addressed in three phases. The first phase addresses Aim 1 with a retrospective cohort study of all Kaiser Permanente Northern California pregnant women diagnosed with a genetic or structural abnormality between 2000 and 2009. Quantitative analyses will be used to describe the proportion of women with an anomalous fetus who decide to continue versus terminate the pregnancy, and the proportion who undergo surgical versus medical termination. This study will offer important background information on the frequency of termination for fetal anomaly, the relative utilization of surgical versus medical methods and factors associated with undergoing each method. The second phase addresses Aim 2 through a series of qualitative interviews with women who have recently terminated an anomalous pregnancy. Interviews will be conducted one to three weeks and three months after the procedure. Subjects will be recruited from UCSF and University of Michigan, two sites where women have equal access to both methods. With the themes that emerge from the interviews, we aim to develop models for (1) how women define decision satisfaction, grief and coping, and (2) factors associated with decision satisfaction, grief and coping among women undergoing each method. Using those models and themes from the interviews, we will modify and test existing instruments of those outcomes for use in this population of women. The third phase is a pilot prospective study of women terminating an anomalous pregnancy to identify predictors of decision satisfaction, grief and coping using the modified instruments. The predictors associated with each method will then allow us to develop a decision aid after this proposal.

Public Health Relevance

Nearly 150,000 pregnant women in the US are diagnosed every year with an abnormally developing fetus and most women choose pregnancy termination. The two methods of termination are very different experiences and should be counseled towards the procedure that best fits their preferences. This proposal seeks to understand women's preferences for and experiences with termination for fetal abnormalities, with the goal to better assist women through the decision-making process.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Mentored Patient-Oriented Research Career Development Award (K23)
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Pediatrics Subcommittee (CHHD)
Program Officer
Davis, Maurice
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University of California San Francisco
Obstetrics & Gynecology
Schools of Medicine
San Francisco
United States
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Rosenstein, Melissa G; Turk, Jema K; Caughey, Aaron B et al. (2014) Dilation and evacuation training in maternal-fetal medicine fellowships. Am J Obstet Gynecol 210:569.e1-5