title: Clinical characteristics of patients from the worldwide registry on peripartum cardiomyopathy (PPCM): EURObservational Research Programme in conjunction with the Heart Failure Association of the European Society of Cardiology Study Group on PPCM.
abstract: The purpose of this study is to describe disease presentation, co-morbidities, diagnosis and initial therapeutic management of patients with peripartum cardiomyopathy (PPCM) living in countries belonging to the European Society of Cardiology (ESC) vs. non-ESC countries.
  
  
  
  Out of 500 patients with PPCM entered by 31 March 2016, we report on data of the first 411 patients with completed case record forms (from 43 countries) entered into this ongoing registry. There were marked differences in socio-demographic parameters such as Human Development Index, GINI index on inequality, and Health Expenditure in PPCM patients from ESC vs. non-ESC countries (P < 0.001 each). Ethnicity was Caucasian (34%), Black African (25.8%), Asian (21.8%), and Middle Eastern backgrounds (16.4%). Despite the huge disparities in socio-demographic factors and ethnic backgrounds, baseline characteristics are remarkably similar. Drug therapy initiated post-partum included ACE inhibitors/ARBs and mineralocorticoid receptor antagonists with identical frequencies in ESC vs. non-ESC countries. However, in non-ESC countries, there was significantly less use of beta-blockers (70.3% vs. 91.9%) and ivabradine (1.4% vs. 17.1%), but more use of diuretics (91.3% vs. 68.8%), digoxin (37.0% vs. 18.0%), and bromocriptine (32.6% vs. 7.1%) (P < 0.001). More patients in non-ESC vs. ESC countries continued to have symptomatic heart failure after 1 month (92.3% vs. 81.3%, P < 0.001). Venous thrombo-embolic events, arterial embolizations, and cerebrovascular accidents were documented in 28 of 411 patients (6.8%). Neonatal death rate was 3.1%.
  
  
  
  PPCM occurs in women from different ethnic backgrounds globally. Despite marked differences in socio-economic background, mode of presentation was largely similar. Embolic events and persistent heart failure were common within 1 month post-diagnosis and required intensive, multidisciplinary management.
authors.affiliation: Hatter Institute for Cardiovascular Research in Africa, Department of Medicine, Faculty of Health Sciences, University of Cape Town, South Africa.|Mary MacKillop Institute for Health Research, Australian Catholic University, Melbourne, Australia.
authors.forename: Karen
authors.initials: K
authors.lastname: Sliwa
authors.affiliation: Hôpital Lariboisière, Université Paris Diderot, Inserm U 942, Paris, France.
authors.forename: Alexandre
authors.initials: A
authors.lastname: Mebazaa
authors.affiliation: Department of Cardiology and Angiology, Medical School Hannover, Hannover, Germany.
authors.forename: Denise
authors.initials: D
authors.lastname: Hilfiker-Kleiner
authors.affiliation: Golden Jubilee National Hospital, Glasgow, UK.
authors.forename: Mark C
authors.initials: MC
authors.lastname: Petrie
authors.affiliation: Eurobservational Research Program (EORP), European Society of Cardiology, Sophie Antipolis, France.|ANMCO Research Center, Firenze, Italy.
authors.forename: Aldo P
authors.initials: AP
authors.lastname: Maggioni
authors.affiliation: Eurobservational Research Program (EORP), European Society of Cardiology, Sophie Antipolis, France.
authors.forename: Cecile
authors.initials: C
authors.lastname: Laroche
authors.affiliation: Institute of Gender in Medicine (GiM), Charité-Universitätsmedizin, Berlin, Germany.
authors.forename: Vera
authors.initials: V
authors.lastname: Regitz-Zagrosek
authors.affiliation: Department of Medicine, Sahlgrenska University Hospital Ostra, Gothenburg, Sweden.
authors.forename: Maria
authors.initials: M
authors.lastname: Schaufelberger
authors.affiliation: Maria Cecilia Hospital, GVM Care & Research, E.S. Health Science Foundation, Cotignola, Italy.
authors.forename: Luigi
authors.initials: L
authors.lastname: Tavazzi
authors.affiliation: University Medical Center Groningen, Groningen, The Netherlands.
authors.forename: Peter
authors.initials: P
authors.lastname: van der Meer
authors.affiliation: Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands.
authors.forename: Jolien W
authors.initials: JW
authors.lastname: Roos-Hesselink
authors.affiliation: Cardiology II, University Medical Center, Belgrade, Serbia.
authors.forename: Petar
authors.initials: P
authors.lastname: Seferovic
authors.affiliation: Department of Genetics, Academic Medical Center, University of Amsterdam, The Netherlands.
authors.forename: Karin
authors.initials: K
authors.lastname: van Spandonck-Zwarts
authors.affiliation: Department of Cardiology, Lagos University Hospital, Lagos.
authors.forename: Amam
authors.initials: A
authors.lastname: Mbakwem
authors.affiliation: Klinik für Innere Medizin III, Kardiologie, Angiologie und Internistische Intensivmedizin, Universitätsklinikum des Saarlandes, Homburg, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Böhm
authors.affiliation: Service de Cardiologie, Pôle Cardio-vasculaire et Pulmonaire, Hôpital Cardiologique, CHRU Lille, Lille Cedex, France.
authors.forename: Frederic
authors.initials: F
authors.lastname: Mouquet
authors.affiliation: Department of Cardiology, Charité-Universitätsmedizin, Berlin, Germany.
authors.forename: Burkert
authors.initials: B
authors.lastname: Pieske
authors.affiliation: Department of Cardiology, University of East Anglia, UK.
authors.forename: Roger
authors.initials: R
authors.lastname: Hall
authors.affiliation: Department of Heart Diseases, Medical University, Clinical Military Hospital, Poland.
authors.forename: Piotre
authors.initials: P
authors.lastname: Ponikowski
authors.affiliation: Department of Cardiology and Angiology, Medical School Hannover, Hannover, Germany.
authors.forename: Johann
authors.initials: J
authors.lastname: Bauersachs
mesh_terms: D000328:Adult; D009202:Cardiomyopathies / Q000150:complications / Q000175:diagnosis / Q000191:economics / Q000628:therapy; D002317:Cardiovascular Agents / Q000627:therapeutic use*; D015897:Comorbidity; D003710:Demography; D019468:Disease Management; D005006:Ethnicity; D005060:Europe / Q000453:epidemiology; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data; D006333:Heart Failure / Q000175:diagnosis / Q000191:economics / Q000453:epidemiology / Q000209:etiology; D006801:Humans; D058725:Peripartum Period / Q000208:ethnology / Q000502:physiology; D011247:Pregnancy; D011249:Pregnancy Complications, Cardiovascular / Q000175:diagnosis / Q000191:economics / Q000453:epidemiology / Q000628:therapy; D011644:Puerperal Disorders / Q000175:diagnosis / Q000191:economics / Q000453:epidemiology / Q000209:etiology; D012042:Registries / Q000706:statistics & numerical data; D012959:Socioeconomic Factors
chemical_list: D002317:Cardiovascular Agents
keywords: Definition; Peripartum cardiomyopathy; Registry; Thrombotic events