PRECONCEPTION CARE FROM POLICY TO PRACTICE AND BACK SABINE FRANCISCA VAN VOORST Preconception care: from policy to practice and back PhD thesis, Erasmus University Rotterdam, The Netherlands The research presented in this dissertation was performed at the department of Obstetrics and Gynaecology, division of Obstetrics and Prenatal Medicine, Erasmus University Medical Centre, Rotterdam, The Netherlands. Part of the research in this dissertation was supported by a grant from the Ministry of Health, Welfare and Sport (VWS), the Netherlands (grant 318804) and the National Organization for Health Research and Development. Financial support for the printing of this dissertation was kindly supported by: Department of Obstetrics and Gynaecology, Erasmus MC, Nederlandse vereniging voor Obstetrie and Gynaecologie (NVOG). Copyright © 2017, Sabine Francisca van Voorst, the Netherlands [email protected] Published manuscripts have been reproduced with explicit permission from the publishers. No part of this thesis may be reproduced or transmitted in any form of written permission of the author. Design: Wouter van Dijk Printing: Optima Grafische Communicatie ISBN / EAN: 978-94-92683-57-1 PRECONCEPTION CARE FROM POLICY TO PRACTICE AND BACK Preconceptiezorg Van beleid naar de praktijk en terug Proefschrift ter verkrijging van de graad van doctor aan de Erasmus Universiteit Rotterdam op gezag van de rector magnificus Prof.dr. H.A.P. Pols en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op woensdag 14 juni 2017 om 11:30 door SABINE FRANCISCA VAN VOORST geboren te Rotterdam PROMOTIECOMMISSIE Promotoren: Prof.dr. E.A.P. Steegers Prof.dr. S. Denktaş Overige leden: Prof.dr. P.J.E. Bindels Prof.dr. K. van der Velden Prof.dr. R.M.W. Hofstra Copromotor: Dr. L.C. de Jong – Potjer Paranimfen: Dr. R. van Baars Drs. V.L. van Voorst TABLE OF CONTENTS Chapter 1 General introduction 7 PART I Agenda setting and intervention selection Chapter 2 Analysis of policy towards improvement of perinatal mortality in the 17 Netherlands (2004–2011) Chapter 3 The Dutch national summit on preconception care: a summary of 41 definitions, evidence and recommendations Chapter 4 Evidence-based preconceptional lifestyle interventions 59 PART II Designing and intervention approach Chapter 5 The Healthy Pregnancy 4 All study: design and cohort profile 105 Chapter 6 Effectiveness of general preconception care accompanied by a 123 recruitment approach: protocol of a community-based cohort study (the Healthy Pregnancy 4 All study) PART III Implementation and evaluation Chapter 7 Current practices of preconception care by primary caregivers in the 145 Netherlands Chapter 8 Developing social marketed individual preconception care 161 consultations: which consumer preferences should it meet? Chapter 9 Implementation of community-based peer health education strategy 179 for preconception care PART IV Back to policy and practice Chapter 10 General discussion 201 Chapter 11 Summary / Samenvatting 217 ADDENDUM List of abbreviations 230 Authors and affiliations 231 List of publications 232 PhD Portfolio 236 About the author 241 Dankwoord 242 GENERAL INTRODUCTION GENERAL INTRODUCTION GENERAL INTRODUCTION Preconception Care Preconception care (PCC) is care for women or couples that contemplate pregnancy. It aims to promote health of the future child by reducing or eliminating risks for adverse pregnancy outcomes, prior to conception and in early pregnancy. Where risks cannot be reduced, PCC aims to inform prospective parents to enable them to make informed decisions about pregnancy. The content of PCC encompasses a vast amount of risk factors associated with adverse perinatal health outcomes, which are important to address prior to conception to ascertain the most benefit. These risk factors can be categorized within 13 domains: health care promotion (e.g. unplanned pregnancy), immunization (e.g. inadequate protection against rubella), infection (e.g. sexually transmitted diseases or toxoplasmosis), chronical medical conditions (e.g. diabetes), psychiatric conditions (e.g. depression and anxiety disorders), maternal exposures (e.g. alcohol and tobacco), genetic risks (e.g. genetic carriership of hemoglobinopathies), nutrition (e.g. obesity), environmental exposures (e.g. solvents in paint), psychosocial stressors (e.g. domestic violence), reproductive history (e.g. obstetric history of premature birth (<37 weeks of gestation)) and risks within special groups (e.g. immigrant and refugee populations).1 The rationale for preconception care Embryonic health is the basis for a healthy start in life, a healthy childhood and health in adulthood.2-4 Preconception care is an essential addition to conventional perinatal health care for several reasons. Firstly, conventional antenatal care does not provide the opportunity for primary prevention. It can only address risk factors when the foetus has already been exposed to risks for adverse pregnancy outcomes as the first consultation during antenatal care occurs at best between the 8th and 12th week of pregnancy. By then, key events in embryonic growth and development have already taken place. At about the 10th week of pregnancy approximately all organs and the placenta have been developed. Developmental rates during the first trimester are even the highest during ones’ entire lifetime.5 Not only are organs formed and does the embryo grow, foetal programming occurs, during which functions of cells are determined. These three events are crucial to the health of the foetus during pregnancy and its extra-uterine life. Addressing preconception risk factors during antenatal care is simply too late, as preconception risk factors may already have irreversibly affected embryonic health. These early exposures may give rise to the so-called ‘Big 3’ perinatal morbidities (small for gestational age (SGA), prematurity and congenital abnormalities), which precedes mortality in 82% of the cases.6 It has been estimated that perinatal morbidity and/ or mortality can be reduced substantially with preconception care.7-10 Secondly, PCC can promote health in later life. Perinatal mortality and morbidity are the first consequences of risk exposure in embryonic period. If preconception risk factors result in permanent alterations in the structure and function of organs, the result of the affected embryonic health is not only limited to perinatal mortality and morbidity, affected embryonic health can 8 contribute to higher risks for diseases in childhood and adulthood (e.g. risks for cardiovascular and metabolic disease).11 PCC’s potential to prevent early exposure to risks provides an opportunity for primary prevention of morbidity in later life. Lastly, PCC can provide additional benefits for parental health. Becoming a parent can be seen as an extra screening moment for health risks and can be an ultimate motivator to change health behaviors. A well-known example is that many women say they will stop smoking if they are pregnant. Smoking cessation reduces a woman’s’ risk of developing restrictive lung disease, (lung) cancer and cardio metabolic diseases. In other words, utilizing the life event of parenthood can 1 provide a momentum for health promotion. INTRODUCTION Organization of PCC in the Netherlands It has been acknowledged to be a true challenge to select the optimal delivery strategy for PCC.12 In the Netherlands, the Health Council of the Netherlands has categorized preconception care into collective preconception care (e.g. national campaigns) and individual preconception care (e.g. consultations (risk assessment and consequent intervention during an individual consultation).13 Individual preconception care is subcategorized into general PCC (individual consultations for women or couples with undefined risks) and specialized PCC (individual consultations for women or couple with defined risks for adverse pregnancy outcomes). Individual consultations provide the opportunity for professional led broad risk assessment. Other forms often opportunistically address single risk factors when women present themselves with specific questions or seek specific information. These forms therefore rely on women’s own risk perception, which is known to be low.14 Given the advantages individual consultations, research in this thesis focusses on organization and implementation of preconception care in the form of individual consultations. Point of departure for this thesis The debate about the high perinatal mortality rate in the Netherlands as of 2004 ultimately resulted in the awareness of the need to innovate in the organization of perinatal health care and to emphasize preventive measures. Within this process, it was suggested that the nationwide introduction of individual PCC consultation for the general public should be implemented in primary care as of 2007.13 Although prerequisites were met for the delivery of general preconception care within primary care (e.g. guidelines and risk assessment tools), nationwide introduction of individual PCC for the general public was stalled. It was thought that more evidence was needed regarding whether PCC approaches would reach high-risk women and would be effective in terms of risk reduction or reduction of perinatal mortality. In 2009 the Erasmus Medical Center initiated the Ready for a Baby Program or the ‘Klaar voor een Kind’ program as it is referred to in Dutch. In this program new collaborations were formed between the public health domain and caregivers from the curative