Women with FH want more information on pregnancy in relation to their condition
Loss of statin treatment years during pregnancy and breastfeeding periods in women with familial hypercholesterolemia
Introduction and methods
Aim of the study
Statin therapy is contraindicated when pregnancy is planned, during pregnancy and during breastfeeding . This poses a challenge for women with familial hypercholesterolemia (FH) as pregnancy-related off-statin periods may increase the lifelong cholesterol burden. This study investigated the duration of pregnancy-related off-statin periods in Norwegian and Dutch women with FH.
This cross-sectional study recruited Norwegian and Dutch women with FH through patient organizations and lipid clinics. Information on FH diagnosis, treatment history, pregnancies and breastfeeding was collected using an online self-administered questionnaire. A total of 102 women with FH (70 Norwegian and 32 Dutch) were included in the analysis. Length of pregnancy-related off-statin periods (sum of off-statin time due to pregnancy planning, pregnancy and breastfeeding) was estimated in 80 women who had used statins before the first pregnancy. The proportion of lost statin treatment time was estimated in 67 women and was defined as total length of pregnancy-related off-statin time divided by length of potential statin treatment from statin start until restart of statins after last pregnancy.
- The median length of pregnancy-related off-statin periods was 2.3 years, with a large individual variation ranging from 0 to 14.2 years. Median length of pregnancy-related off-statin periods per pregnancy was 1.3 (range 0 to 4.7) years.
- At a mean age of 31 at last pregnancy, women with FH had lost a median of 18% (range 0% to 100%) of their potential statin treatment time due to pregnancy-related off-statin periods.
- The proportion of Norwegian women with FH who breastfed was significantly lower compared to the Norwegian general population (P < 0.001). This trend was also observed among Dutch women, albeit not significant. In addition, among the women with FH who breastfed, 22% had stopped breastfeeding earlier than desired in order to restart statin treatment earlier.
- The proportion of women who had an appointment with a physician specialized in FH during the first pregnancy was low (29% of the Dutch women and 13% of the Norwegian women).
- 86% of women with FH wanted to receive more information on pregnancy and breastfeeding in relation to FH.
Women with FH may lose statin treatment time due to pregnancy planning, pregnancy and breastfeeding. It remains to be explored whether these pregnancy-related off-statin periods have an effect on the CV risk in these women.
The authors further stated that: “Future guidelines on the management of FH women should take into account the exposure of increased cholesterol during pregnancy-related off-statin periods, and include recommendations on close follow-up of the FH women in these periods, preferably by a lipid specialist or FH specialist in order to reduce the duration of pregnancy-related off-statin periods to a minimum.”