Extensive pregnancy-related off-treatment time in women with familial hypercholesterolaemia

Marianne Klevmoen; Jeanine Roeters van Lennep; Martin Prøven Bogsrud; Elisabeth Kleivhaug Vesterbekkmo; Eva Kristine Ringdal Pedersen; Anders Hovland; Janneke W C M Mulder; Hilde Kristin Brekke; Per Ole Iversen; Martina Vaclová; Michal Vrablík; Tomáš Freiberger; Kjetil Retterstøl; Kirsten B Holven

doi:10.1016/j.atherosclerosis.2026.120668

Extensive pregnancy-related off-treatment time in women with familial hypercholesterolaemia

Atherosclerosis. 2026 Feb 19:415:120668. doi: 10.1016/j.atherosclerosis.2026.120668. Online ahead of print.

Authors

Affiliations

¹ Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway; Norwegian National Network for Familial Hypercholesterolaemia, Oslo University Hospital, Oslo, Norway.
² Department of Internal Medicine, Erasmus MC Cardiovascular Institute, University Medical Center Rotterdam, Rotterdam, the Netherlands.
³ Unit for Cardiac and Cardiovascular Genetics, Oslo University Hospital, Norway; Department of pharmaceuticals and biomedicine, The Norwegian Directorate of Health, Oslo, Norway.
⁴ Clinic of Cardiology, St. Olavs University Hospital, Trondheim, Norway.
⁵ Department of Heart Disease, Haukeland University Hospital, Bergen, Norway; Department of Clinical Science, University of Bergen, Bergen, Norway.
⁶ Nordland Heart Center, Bodø, Norway.
⁷ Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway.
⁸ Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway; Department of Haematology, Oslo University Hospital, Oslo, Norway.
⁹ National Institute for Metabolic and Cardiovascular Disease Research, Czech Republic; Third Department of Internal Medicine, General University Hospital, First Faculty of Medicine, Charles University, Prague, Czech Republic.
¹⁰ Third Department of Internal Medicine, General University Hospital, First Faculty of Medicine, Charles University, Prague, Czech Republic.
¹¹ National Institute for Metabolic and Cardiovascular Disease Research, Czech Republic; Centre of Cardiovascular Surgery and Transplantation, Brno, Czech Republic; Medical Faculty, Masaryk University, Brno, Czech Republic.
¹² Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway; Lipid Clinic, Oslo University Hospital, Oslo, Norway.
¹³ Department of Nutrition, Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway; Norwegian National Network for Familial Hypercholesterolaemia, Oslo University Hospital, Oslo, Norway. Electronic address: kirsten.holven@medisin.uio.no.

PMID: 41740525
DOI: 10.1016/j.atherosclerosis.2026.120668

Abstract

Background and aims: Women with familial hypercholesterolaemia (FH) lose substantial treatment time during their reproductive years as most lipid-lowering therapies are contraindicated from the preconception through the end of breastfeeding. We examined the duration of real-life pregnancy-related off-treatment time in 27 women with FH in Norway.

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords: Breastfeeding; Familial hypercholesterolaemia; Pregnancy; Pregnancy-related off-treatment time.

Associated data

ClinicalTrials.gov/NCT05367310