Background: Around 25 million Caucasian women are carriers of the FV Leiden mutation that causes activated protein C (APC) resistance. This is a heritable condition with a lifelong increased risk of venous thromboembolism. We performed this study to investigate women's reactions to their awareness of being APC-resistant and the consequences of this awareness.
Methods: All APC-resistant women (n = 270) included in a prior study on APC resistance and pregnancy (n = 2480) were invited by written questionnaire to describe their reactions to having APC resistance, how this had changed their lives, and how they experienced our information. Answers were obtained from 215 of the 270 women (80%).
Results: More than 94% of the APC-resistant women were satisfied with knowing themselves to be APC-resistant and pleased that they had enrolled in the study. Of the women on combined oral contraceptives (COC), 84% changed their method of contraception, but 16% continued on COC. One-third of the women reported becoming more worried or afraid of getting pregnant again as a result of their awareness of being APC-resistant. The proportion of women who sought legal abortions during a 2-year period after receiving this information was similar in both subgroups: 4.4% (12/270) vs. 4.3% (94/2210), p = 0.9.
Conclusions: We conclude that most APC-resistant women were pleased to learn of their APC resistance status, that there was not an increased incidence of legal abortions, but almost one-third reported being more worried or afraid of getting pregnant again.