A Norwegian cohort within the FH-FEMINA study followed 27 women with familial hypercholesterolaemia from 36 weeks of gestation until one year postpartum or end of breastfeeding. Median pregnancy-related off-treatment time per woman was 2.9 years (range 0.8–12) across all childbirths. The pregnancy itself accounted for only 42% of off-treatment time; the pre- and post-pregnancy windows together accounted for 58%. Including untreated years in childhood and before diagnosis, lifelong off-treatment time reached a median of 66% of total lifespan. The authors — including Jeanine Roeters van Lennep (Erasmus MC) and Janneke Mulder, both active in the Dutch LEEFH cascade screening programme — call for earlier FH diagnosis in girls, prompt resumption of lipid-lowering therapy immediately after breastfeeding and between pregnancies, and urgently needed evidence on statin safety during pregnancy and lactation.
Women with FH in Norway who had completed the ongoing FH-FEMINA study (ClinicalTrials.gov ID NCT05367310) were included. Women were followed from 36th week of gestation and until one year after delivery or until end of breastfeeding. Information on use of medication before, during and after the current and previous pregnancies was collected. Pregnancy-related off-treatment time was calculated from discontinuation of lipid-lowering therapy when planning pregnancy, throughout pregnancy, and after delivery.
The total duration of pregnancy-related off-treatment time after all childbirths (median 1, range 1-3) per woman was a median of 2.9 years (25th-75th percentile; 1.6-4.0), ranging from 0.8 to 12 years. The pregnancy itself accounted for median of 42.1% of the pregnancy-related off-treatment time, whereas the time before and after pregnancy accounted for a median of 57.9% (range 11.4% to 91.2%). When including untreated years in childhood and/or prior to diagnosis, the lifelong off-treatment time represented a median of 66.3% (range 41.9 to 100%) of lifetime without treatment.
Early diagnosis and initiation of treatment is essential in girls with FH to compensate for pregnancy-related off-treatment time later in life. To minimize these pregnancy-related off-treatment periods, healthcare professionals should support women with FH to resume lipid-lowering therapy immediately after breastfeeding and between pregnancies. In addition, more knowledge on the potential effects of statin use during pregnancy and breastfeeding on maternal and offspring health is urgently needed.
