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Pregnancy in women with known cardiomyopathy

Key points

  • Cardiac disease is the leading cause of indirect maternal death in the UK and the majority ofdeaths are from acquired heart disease.
  • Cardiomyopathy is a heterogeneous term and with regard to pregnancy encompasses fourbroad groups – dilated cardiomyopathy (DCM), hypertrophic cardiomyopathy (HCM), peripartum cardiomyopathy (PPCM) and arrhythmogenic right ventricular cardiomyopathy (ARVC).
  • At present studies on all of these conditions are relatively limited, therefore this study is neededto determine what the outcomes are for pregnant women with these conditions and to identify ifthey are receiving access to specialist services for women with known previous cardiomyopathy.

Surveillance period

1st June 2021 – 31st May 2024


Cardiac disease is the leading cause of death in pregnancy in the UK, with approximately one third of maternal cardiac deaths being due to cardiomyopathy and related myocardial disease (1). Maternal andneonatal outcomes for women with known cardiomyopathy appear to be worse when compared withmany other forms of heart disease but studies are very limited. Studies of women with dilated cardiomyopathy, hypertrophic cardiomyopathy and arrhythmogenic right ventricular cardiomyopathyinclude fewer than 100 women and there is thus a paucity of data describing maternal and fetal outcomes (2-4). Women with previous peripartum cardiomyopathy (PPCM) make up a small subset ofthe cohort of women with known cardiomyopathy, and previous PPCM is associated with high maternal morbidity and mortality (5). Consensus guidelines currently recommend that women who have beendiagnosed with PPCM are advised against a future pregnancy regardless of whether they have fullrecovery in myocardial function, although it is acknowledged that women with persistent myocardialdysfunction following their index pregnancy are more likely to relapse in a future pregnancy and havethere is a greater chance of maternal death. At present data on subsequent pregnancy in women with PPCM is drawn from a small number of studies and does not adequately address maternal and fetal outcomes.


To use the UK Obstetric Surveillance System (UKOSS) to describe the incidence, risk factors, current management and outcomes of pregnancy in women with known previous cardiomyopathy.

Research questions

  • What is the incidence of women with a prior history of cardiomyopathy who have gone on to have subsequent pregnancies in the UK?
  • Do women with a prior history of cardiomyopathy receive appropriate preconception counselling?
  • How are women with a prior history of cardiomyopathy risk assessed for relapse/recurrence?
  • How are women with a prior history cardiomyopathy managed during subsequent pregnancies?
  • What are the fetal and maternal outcomes in women with an established diagnosis of cardiomyopathy in the UK?

Case definition

All pregnant women with an established diagnosis of cardiomyopathy.

This includes women with known dilated cardiomyopathy, hypertrophic cardiomyopathy, previousperipartum cardiomyopathy and arrhythmogenic right ventricular cardiomyopathy (ARVC).


This study is funded by Heart Research UK.

Ethics committee approval

This study has been approved by the North London Brent REC (Ref. Number: 10/H0717/20).


Matthew Cauldwell, St. George's Hospital, London

Mark Johnson, Chelsea and Westminster Hospital

Philip Steer, Emeritus Professor of Obstetrics

Michael Gatzoulis, Royal Brompton Hospital

Sample Data Collection Form

UKOSS Pregnancy in women with known cardiomyopathy DCF


  1. Knight, M., et al., Eds. (2020). Saving Lives, Improving Mothers' Care - Lessons learned toinform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths andMorbidity 2016-18. Oxford, National Perinatal Epidemiology Unit, University of Oxford.
  2. Grewal J, Siu SC, et al. Pregnancy outcomes in women with dilated cardiomyopathy. J Am CollCardiol. 2009;55(1):45-52.
  3. Hodes AR, Tichnell C, et al. Pregnancy course and outcomes in women with arrhythmogenicright ventricular cardiomyopathy. Heart. 2016;102(4):303-12.
  4. Goland S, van Hagen IM, et al. Pregnancy in women with hypertrophic cardiomyopathy: datafrom the European Society of Cardiology initiated Registry of Pregnancy and Cardiac disease(ROPAC). Eur Heart J. 2017;38(35):2683-2690.
  5. Hilfiker-Kleiner D, Haghikia A, et al. Outcome of subsequent pregnancies in patients with ahistory of peripartum cardiomyopathy. Eur J Heart Fail. 2017;19(12):1723-1728.

Updated: Tuesday, 17 January 2023 19:45 (v20)

Contact us

For more information about UKOSS, please view the contact details page