Greutmann, Matthias

Silversides, Candice K.

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EDITORIALThe ROPAC registry: a multicentre collaborationon pregnancy outcomes in women with heartdiseaseMatthias Greutmann1* and Candice K. Silversides21Adult Congenital Heart Disease Program, University Hospital of Zurich, Raemistrasse 100, 8091 Zurich, Switzerland; and 2University of Toronto Obstetric Medicine and Pregnancyand Heart Disease Programs Toronto Congenital Cardiac Centre for Adults, Mount Sinai Hospital and University Health Network, Toronto, Ontario, CanadaOnline publish-ahead-of-print 9 October 2012This editorial refers to ‘Outcome of pregnancy in patientswith structural or ischaemic heart disease: results of aregistry of the European Society of Cardiology’†, by J.W.Roos-Hesselink et al., on page 657The haemodynamic changes of pregnancy can have a negativeimpact on maternal cardiac health, especially in women with pre-existing cardiac disease. In the most recent Confidential Inquiriesinto Maternal Mortality in the United Kingdom, heart diseasewas found to be the most common indirect cause of maternaldeath during pregnancy.1 Pregnancy counselling and managementfor women with heart disease is being increasingly recognized asan important aspect of their overall cardiac care. With increasingawareness, there has been a growing body of research focusedon pregnancy outcomes and risk stratification. There have alsobeen new initiatives to improve clinical care, such as the 2011European Society of Cardiology (ESC) guidelines on the manage-ment of cardiovascular disease during pregnancy.2 While ourcurrent understanding of pregnancy risk assessment and manage-ment has improved over the past 20 years, many questions canonly be answered by collaborative efforts.Roos-Hesselink and colleagues have now presented the firstreport of their multicentre, multinational Registry On Pregnancyand Cardiac disease (ROPAC) registry, supported by the ESC.3The study is important because it provides a global perspective onpregnancy in women with heart disease. It included 1321 pregnan-cies in women from 28 countries, the majority of which were devel-oped countries (86%) in Europe and North America. Most womenfrom developed countries had underlying congenital heart disease(74%). In contrast, valvular heart disease was the predominantunderlying cardiac condition (72%) in pregnancies reported fromwomen in developing countries where rheumatic heart diseaseremains endemic. The study reports high rates of adverse maternalcardiac events during pregnancy including increased risk of maternaldeaths. Hospital admission for cardiac reasons complicated 15% ofall pregnancies, primarily for treatment of heart failure. Similarlyhigh event rates of adverse maternal cardiac events have beenreported by other groups (Figure 1).4,5 Collectively, these studieshighlight the need to identify women at highest risk and todevelop care models to improve outcomes. Because maternaldeaths at any one centre are relative rare, largemulticentre registriessuch as this are necessary to study mortality outcomes. Althoughrare, maternal mortality (13/1321 pregnancies, 7 due to heartfailure, 3 due to thrombo-embolic events, and 3 due to non-cardiac-related sepsis) was much more likely to occur in womenwith heart disease compared with the general population. Whilethere are a number of risk scores for predicting adverse pregnancyoutcomes in women with heart disease, this study externally vali-dated the model proposed by the British Working Group, demon-strating its utility in predicting maternal mortality, the occurrenceof heart failure, and fetal death.2,6Cardiac disease in pregnant women will probably be increasinglyencountered in medical practice. With advances in cardiac surgeryand improved childhood survival, there is a growing population ofyoung women of childbearing age with congenital heart disease.7,8Most of these women, particularly those with lesions of moderateor great complexity, have residua or sequelae that increase theirrisk of cardiovascular complications during pregnancy. Rheumaticheart disease, rare in developed countries, remains a major healthproblem in developing and underdeveloped countries. Womenwith rheumatic valve lesions such as mitral stenosis tolerate preg-nancy poorly.9 The prevalence of ischaemic heart disease complicat-ing pregnancies is increasing,1,10,11 perhaps related to trends inwestern societies of having children later in life and associatedhigher rates of cardiovascular risk factors in this older cohort.Further increases may occur with increasing assisted fertilization inolder women. With this growing and evolving population, ongoingeducation of health care providers and patients is important.Pre-conception counselling allows women to make informedpregnancy decisions, and risk stratification tools can be helpful to* Corresponding author. Tel: +41 44 255 3883, Fax: +41 44 255 8701, Email: Matthias.Greutmann@usz.ch† doi:10.1093/eurheartj/ehs270.The opinions expressed in this article are not necessarily those of the Editors of the European Heart Journal or of the European Society of Cardiology.Published on behalf of the European Society of Cardiology. All rights reserved. & The Author 2012. For permissions please email: journals.permissions@oup.comEuropean Heart Journal (2013) 34, 634–635doi:10.1093/eurheartj/ehs335predict pregnancy risk. A number of risk stratification tools havebeen proposed to identify those women at highest risk.4–6,12 Forsome cardiac lesions, there is very little risk of adverse cardiacevents during pregnancy, no special precautions are requiredduring pregnancy, and women need nothing more than reassur-ance. In other cases, pregnancy poses a prohibitive risk andwomen need to be educated about the need to avoid pregnancyand about safe contraception options. Unfortunately, a numberof groups have reported that women with heart disease oftenhave inaccurate knowledge of pregnancy risk.13,14 Once pregnant,women identified as intermediate or high risk should receive coor-dinated care, with input from a cardiologist with exptertise in preg-nancy and heart disease, a high-risk obstetrician, and an obstetricalanaesthetist. To date, few studies have addressed delivery of careor quality of care in this high-risk population.The ROPAC registry is likely to have many roles. As the registryincreases in size, rare cardiac conditions or outcomes (such as ma-ternal, fetal, or neonatal mortality) can be studied in more detail.The registry data can be used for validating and refining existingrisk stratification scoring models or identifying novel risk markersderived from smaller mechanistic studies. The registry data canhelp to determine and compare regional treatment strategies andoutcomes. Other parameters, such as healthcare costs, could bestudied. The ROPAC registry is an important initiative that willhelp to improve the care of pregnant women with heart disease.Conflict of interest: none declared.References1. Cantwell R, Clutton-Brock T, Cooper G, Dawson A, Drife J, Garrod D, Harper A,Hulbert D, Lucas S, McClure J, Millward-Sadler H, Neilson J, Nelson-Piercy C,Norman J, O’Herlihy C, Oates M, Shakespeare J, de Swiet M, Williamson C,Beale V, Knight M, Lennox C, Miller A, Parmar D, Rogers J, Springett A. Savingmothers’ lives: reviewing maternal deaths to make motherhood safer: 2006–2008. The Eighth Report of the Confidential Enquiries into Maternal Deaths inthe United Kingdom. BJOG 2011;118 Suppl 1:1–203.2. Regitz-Zagrosek V, Blomstrom Lundqvist C, Borghi C, Cifkova R, Ferreira R,Foidart JM, Gibbs JS, Gohlke-Baerwolf C, Gorenek B, Iung B, Kirby M,Maas AH, Morais J, Nihoyannopoulos P, Pieper PG, Presbitero P,Roos-Hesselink JW, Schaufelberger M, Seeland U, Torracca L, Bax J,Auricchio A, Baumgartner H, Ceconi C, Dean V, Deaton C, Fagard R,Funck-Brentano C, Hasdai D, Hoes A, Knuuti J, Kolh P, McDonagh T,Moulin C, Poldermans D, Popescu BA, Reiner Z, Sechtem U, Sirnes PA,Torbicki A, Vahanian A, Windecker S, Aguiar C, Al-Attar N, Garcia AA,Antoniou A, Coman I, Elkayam U, Gomez-Sanchez MA, Gotcheva N,Hilfiker-Kleiner D, Kiss RG, Kitsiou A, Konings KT, Lip GY, Manolis A,Mebaaza A, Mintale I, Morice MC, Mulder BJ, Pasquet A, Price S, Priori SG,Salvador MJ, Shotan A, Silversides CK, Skouby SO, Stein JI, Tornos P,Vejlstrup N, Walker F, Warnes C. ESC Guidelines on the management of cardio-vascular diseases during pregnancy: the Task Force on the Management of Car-diovascular Diseases during Pregnancy of the European Society of Cardiology(ESC). Eur Heart J 2011;32:3147–3197.3. Roos-Hesselink JW, Ruys TPE, Stein JI, Thile´n U, Webb GD, Niwa K,Kaemmerer H, Baumgartner H, Budts W, Maggioni AP, Tavazzi L, Taha T,Johnson MR, Hall R. Outcome of pregnancy in patients with structural or ischae-mic heart disease: results of a registry of the European Society of Cardiology. EurHeart J 2013;34:657–665.4. Siu SC, Sermer M, Colman JM, Alvarez AN, Mercier LA, Morton BC, Kells CM,Bergin ML, Kiess MC, Marcotte F, Taylor DA, Gordon EP, Spears JC, Tam JW,Amankwah KS, Smallhorn JF, Farine D, Sorensen S. Prospective multicenterstudy of pregnancy outcomes in women with heart disease. Circulation 2001;104:515–521.5. Drenthen W, Boersma E, Balci A, Moons P, Roos-Hesselink JW, Mulder BJ,Vliegen HW, van Dijk AP, Voors AA, Yap SC, van Veldhuisen DJ, Pieper PG. Pre-dictors of pregnancy complications in women with congenital heart disease. EurHeart J 2010;31:2124–2132.6. Thorne S, MacGregor A, Nelson-Piercy C. Risks of contraception and pregnancyin heart disease. Heart 2006;92:1520–1525.7. Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital heart diseasein the general population: changing prevalence and age distribution. Circulation2007;115:163–172.8. Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal trends in survivalto adulthood among patients born with congenital heart disease from 1970 to1992 in Belgium. Circulation 2010;122:2264–2272.9. Silversides CK, Colman JM, Sermer M, Siu SC. Cardiac risk in pregnant womenwith rheumatic mitral stenosis. Am J Cardiol 2003;91:1382–1385.10. Bush N, Nelson-Piercy C, Spark P, Kurinczuk JJ, Brocklehurst P, Knight M. Myo-cardial infarction in pregnancy and postpartum in the UK. Eur J Cardiovasc PrevRehabil 2011;in press.11. Gelson E, Gatzoulis MA, Steer P, Johnson MR. Heart disease—why is maternalmortality increasing? BJOG 2009;116:609–611.12. Khairy P, Ouyang DW, Fernandes SM, Lee-Parritz A, Economy KE, Landzberg MJ.Pregnancy outcomes in women with congenital heart disease. Circulation 2006;113:517–524.13. Kovacs AH, Harrison JL, Colman JM, Sermer M, Siu SC, Silversides CK. Pregnancyand contraception in congenital heart disease: what women are not told. J Am CollCardiol 2008;52:577–578.14. Vigl M, Kaemmerer M, Seifert-Klauss V, Niggemeyer E, Nagdyman N, Trigas V,Bauer U, Schneider KT, Berger F, Hess J, Kaemmerer H. Contraception inwomen with congenital heart disease. Am J Cardiol 2010;106:1317–1321.Figure 1 Risk of heart failure, other non-fatal adverse cardio-vascular events, and maternal death in three large multicentrestudies of pregnancy outcomes in women with heart disease.*The CARPREG study and the ROPAC registry include womenwith congenital and acquired heart disease. **The ZAHARAstudy included only women with congenital heart disease.Editorial 635

The ROPAC registry: a multicentre collaboration on pregnancy outcomes in women with heart disease

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