A consensus statement on birth defects surveillance, prevention, and care in Latin America and the Caribbean.

Birth defects contribute up to 21% of the mortality in those under 5 years of age in Latin America and the Caribbean (LAC), and that burden has been compounded by the Zika virus epidemic. In 2001, the March of Dimes launched a series of biennial assemblies called the International Conference on Birth Defects and Disabilities in the Developing World (ICBD). The latest ICBD, in 2017, convened in Bogotá, Colombia, and was attended by over 300 professionals, policymakers, and donors. The conference attendees, a majority of whom were from LAC, supported a call to action in the form of a consensus statement. The consensus statement lists key actions for maximizing birth defects surveillance, prevention, and care in LAC: 1) improving surveillance; 2) reducing risks for birth defects; 3) fortifying staple foods; 4) preventing and treating infections associated with birth defects; 5) implementing newborn screening; 6) providing care and services for people with birth defects and disabilities; 7) involving governments, civil society, and international agencies; and 8) advancing research for birth defects. Implementation and scale-up of evidence-based interventions using multisectoral and multidisciplinary collaborative approaches were endorsed. LAC countries can leverage technology and social media to advance and advocate for approaches identified in the consensus statement. The consensus statement can be used as a guide by both governments and nongovernmental agencies to take immediate steps for improving the quality of life of those living with birth defects and associated disabilities in the LAC countries.

Los defectos congénitos contribuyen hasta con el 21% de la mortalidad de los menores de 5 años en América Latina y el Caribe (ALC); la epidemia de síndrome congénito por el virus del Zika aumentó esa carga. En el 2001, la organización March of Dimes instituyó una serie de asambleas bienales denominadas Conferencia internacional sobre defectos congénitos y discapacidades en el mundo en desarrollo (ICBD). La más re-ciente, en el 2017, se llevó a cabo en Bogotá (Colombia) y contó con la presencia de más de 300 profesionales, responsables de las políticas y donantes. Los asistentes a la conferencia, en su mayoría de América Latina y el Caribe, apoyaron un llamamiento a la acción en forma de una declaración de consenso. Dicha declaración enumera las acciones clave para potenciar al máximo la vigilancia, la prevención y la atención de los defectos congénitos en América Latina y el Caribe, a saber: 1) mejorar la vigilancia; 2) reducir los factores de riesgo asociados a defectos congénitos; 3) fortificar los alimentos de primera necesidad; 4) prevenir y tratar las infecciones asociadas con los defectos congénitos; 5) instituir programas de tamizaje a los recién nacidos; 6) prestar atención y servicios a las personas con defectos congénitos y discapacidades; 7) hacer participar a los gobiernos, la sociedad civil y los organismos internacionales; y 8) promover la investigación sobre los defectos congénitos. Se respaldaron la ejecución y la ampliación a mayor escala de las intervenciones basadas en evidencia, con enfoques colaborativos multisectoriales y multidisciplinarios. Los países de América Latina y el Caribe pueden aprovechar la tecnología y las redes sociales para impulsar y promover las estrategias mencionadas en la declaración de consenso. Por su parte, tanto los gobiernos como los organismos no gubernamentales pueden usar la declaración de consenso como una guía para adoptar medidas inmediatas para mejorar la calidad de vida de las personas con defectos congénitos y las discapacidades asociadas, en los países de América Latina y el Caribe.

As malformações congênitas constituem 21% das causas de morte em crianças menores de 5 anos na América Latina e no Caribe (ALC) e este ônus tem sido agravado pela epidemia do vírus zika. Em 2001, a March of Dimes lançou uma série de encontros bienais denominada International Conference on Birth Defects and Disabilities in the Developing World (conferência internacional sobre malformações congênitas e deficiências no mundo em desenvolvimento, ICBD). A última ICBD foi realizada em Bogotá, na Colômbia, em 2017 e contou com a participação de mais de 300 profissionais, formuladores de políticas e doadores. Os participantes da conferência, na sua maioria da ALC, demonstraram apoio a um chamado à ação na forma de uma declaração de consenso. Nela, enumeram-se as principais ações para aumentar ao máximo a vigilância, prevenção e atenção às malformações congênitas na ALC: 1) melhorar a vigilância; 2) reduzir os riscos de malformações congênitas; 3) fortificar os gêneros alimentícios de primeira necessidade; 4) prevenir e tratar as infecções associadas às malformações congênitas; 5) implementar testes de detecção em recém-nascidos; 6) prestar atendimento e serviços aos portadores de malformações congênitas e deficiências; 7) atrair a participação de governos, sociedade civil e organismos internacionais e 8) incentivar o progresso da pesquisa na área de malformações congênitas. Foram endossadas a implementação e a expansão das intervenções com fundamentação científica usando enfoques colaborativos multissetoriais e multidisciplinares. Os países da ALC devem se valer de tecnologia e das mídias sociais para promover e defender os enfoques identificados na declaração de consenso. A declaração pode servir como guia aos governos e organismos não governamentais ao tomarem medidas imediatas para melhorar a qualidade de vida de quem vive com malformações congênitas e deficiências associadas nos países da ALC.

A consensus statement on birth defects surveillance, prevention, and care in Latin America and the Caribbean

[ABSTRACT]. Birth defects contribute up to 21% of the mortality in those under 5 years of age in Latin America and the Caribbean (LAC), and that burden has been compounded by the Zika virus epidemic. In 2001, the March of Dimes launched a series of biennial assemblies called the International Conference on Birth Defects and Disabilities in the Developing World (ICBD). The latest ICBD, in 2017, convened in Bogotá, Colombia, and was attended by over 300 professionals, policymakers, and donors. The conference attendees, a majority of whom were from LAC, supported a call to action in the form of a consensus statement. The consensus statement lists key actions for maximizing birth defects surveillance, prevention, and care in LAC: 1) improving surveillance; 2) reducing risks for birth defects; 3) fortifying staple foods; 4) preventing and treating infections associated with birth defects; 5) implementing newborn screening; 6) providing care and services for people with birth defects and disabilities; 7) involving governments, civil society, and international agencies; and 8) advancing research for birth defects. Implementation and scale-up of evidence-based interventions using multisectoral and multidisciplinary collaborative approaches were endorsed. LAC countries can leverage technology and social media to advance and advocate for approaches identified in the consensus statement. The consensus statement can be used as a guide by both governments and nongovernmental agencies to take immediate steps for improving the quality of life of those living with birth defects and associated disabilities in the LAC countries.

[RESUMEN]. Los defectos congénitos contribuyen hasta con el 21% de la mortalidad de los menores de 5 años en América Latina y el Caribe (ALC); la epidemia de síndrome congénito por el virus del Zika aumentó esa carga. En el 2001, la organización March of Dimes instituyó una serie de asambleas bienales denominadas Conferencia internacional sobre defectos congénitos y discapacidades en el mundo en desarrollo (ICBD). La más reciente, en el 2017, se llevó a cabo en Bogotá (Colombia) y contó con la presencia de más de 300 profesionales, responsables de las políticas y donantes. Los asistentes a la conferencia, en su mayoría de América Latina y el Caribe, apoyaron un llamamiento a la acción en forma de una declaración de consenso. Dicha declaración enumera las acciones clave para potenciar al máximo la vigilancia, la prevención y la atención de los defectos congénitos en América Latina y el Caribe, a saber: 1) mejorar la vigilancia; 2) reducir los factores de riesgo asociados a defectos congénitos; 3) fortificar los alimentos de primera necesidad; 4) prevenir y tratar las infecciones asociadas con los defectos congénitos; 5) instituir programas de tamizaje a los recién nacidos; 6) prestar atención y servicios a las personas con defectos congénitos y discapacidades; 7) hacer participar a los gobiernos, la sociedad civil y los organismos internacionales; y 8) promover la investigación sobre los defectos congénitos. Se respaldaron la ejecución y la ampliación a mayor escala de las intervenciones basadas en evidencia, con enfoques colaborativos multisectoriales y multidisciplinarios. Los países de América Latina y el Caribe pueden aprovechar la tecnología y las redes sociales para impulsar y promover las estrategias mencionadas en la declaración de consenso. Por su parte, tanto los gobiernos como los organismos no gubernamentales pueden usar la declaración de consenso como una guía para adoptar medidas inmediatas para mejorar la calidad de vida de las personas con defectos congénitos y las discapacidades asociadas, en los países de América Latina y el Caribe.

[RESUMO]. As malformações congênitas constituem 21% das causas de morte em crianças menores de 5 anos na América Latina e no Caribe (ALC) e este ônus tem sido agravado pela epidemia do vírus zika. Em 2001, a March of Dimes lançou uma série de encontros bienais denominada International Conference on Birth Defects and Disabilities in the Developing World (conferência internacional sobre malformações congênitas e deficiências no mundo em desenvolvimento, ICBD). A última ICBD foi realizada em Bogotá, na Colômbia, em 2017 e contou com a participação de mais de 300 profissionais, formuladores de políticas e doadores. Os participantes da conferência, na sua maioria da ALC, demonstraram apoio a um chamado à ação na forma de uma declaração de consenso. Nela, enumeram-se as principais ações para aumentar ao máximo a vigilância, prevenção e atenção às malformações congênitas na ALC: 1) melhorar a vigilância; 2) reduzir os riscos de malformações congênitas; 3) fortificar os gêneros alimentícios de primeira necessidade; 4) prevenir e tratar as infecções associadas às malformações congênitas; 5) implementar testes de detecção em recém-nascidos; 6) prestar atendimento e serviços aos portadores de malformações congênitas e deficiências; 7) atrair a participação de governos, sociedade civil e organismos internacionais e 8) incentivar o progresso da pesquisa na área de malformações congênitas. Foram endossadas a implementação e a expansão das intervenções com fundamentação científica usando enfoques colaborativos multissetoriais e multidisciplinares. Os países da ALC devem se valer de tecnologia e das mídias sociais para promover e defender os enfoques identificados na declaração de consenso. A declaração pode servir como guia aos governos e organismos não governamentais ao tomarem medidas imediatas para melhorar a qualidade de vida de quem vive com malformações congênitas e deficiências associadas nos países da ALC.

Prevention of Congenital Disorders and Care of Affected Children: A Consensus Statement.

As the Sustainable Development Goals are adopted by United Nations member states, children with congenital disorders remain left behind in policies, programs, research, and funding. Although this finding was recognized by the creation and endorsement of the 63rd World Health Assembly Resolution in 2010 calling on United Nations member states to strengthen prevention of congenital disorders and the improvement of care of those affected, there has been little to no action since then. The Sustainable Development Goals call for the global health and development community to focus first and foremost on the most vulnerable and those left behind in the Millennium Development Goal era. To maximize the opportunity for every woman and couple to have a healthy child and to reduce the mortality and severe disability associated with potentially avoidable congenital disorders and their consequences for the children affected, their families and communities, and national health care systems, we propose priority measures that should be taken urgently to address this issue.

Improving awareness of preconception health among adolescents: experience of a school-based intervention in Lebanon.

BACKGROUND: Maternal behavior before and after conception affects maternal and child health. Limited awareness of adolescents in preconception health may be addressed through school education. The aim of this intervention is to assess preconception health awareness among adolescents in Lebanese high schools and to test the effectiveness of a one-time educational session in improving preconception knowledge. METHODS: The intervention consisted of a 30-minute educational session about good practices in preconception health, developed by the National Collaborative Perinatal Neonatal Network's (NCPNN) research team. A convenience sample of high school Lebanese students in grades 10 to 12, aged 14 to 26 years old, from 70 private and public schools in all six Lebanese provinces, participated in the intervention in 2011 and 2012. A multiple-choice questionnaire administered prior to and 2 months after the session was used to assess knowledge improvement among the students. RESULTS: A total of 7,290 students were enrolled. After the session, mean scores of correct answers increased from 4.36 to 6.42 out of 10, representing a 47.2% improvement (p < 0.001). The percent of correct answers increased for all the questions regarding health practices (p < 0.001). The greatest improvement was observed for questions about Trisomy 21, folic acid intake and toxoplasmosis with percentages improvement of 96%, 172% and 83% respectively. Being female or in private school was a significant predictor of higher scores in both pre-test and post-test (p < 0.001). CONCLUSIONS: Awareness campaigns in schools increased the preconception health knowledge among high school students. We recommend expanding the scope of this intervention into universities in Lebanon.

Preconception health assessment in China, Lebanon and the Philippines: applicability to other countries.

To test the utility of a preconception checklist tool in identifying preconception health needs of women in three countries; China, Lebanon and the Philippines. An academic medical center within each country participated in the development and testing of a preconception checklist tool, which was administered over a 6 month period to selected target groups in each country. The checklist provided valuable data on the preconception health of 6,530 women. Aggregated data identified common preconception health needs across all countries, including provision of modern contraceptives and adequate immunization coverage; HIV and STI screening; treatment for anemia; and counseling for maintenance of a healthy weight. A preconception checklist tool was found to be useful in distinct cultural settings. The study was a pilot. Future steps include validation and standardization of the checklist, data from which could be used to help shape preconception care policies and implementation strategies.

Preventing preterm births: analysis of trends and potential reductions with interventions in 39 countries with very high human development index.

BACKGROUND: Every year, 1·1 million babies die from prematurity, and many survivors are disabled. Worldwide, 15 million babies are born preterm (<37 weeks' gestation), with two decades of increasing rates in almost all countries with reliable data. The understanding of drivers and potential benefit of preventive interventions for preterm births is poor. We examined trends and estimate the potential reduction in preterm births for countries with very high human development index (VHHDI) if present evidence-based interventions were widely implemented. This analysis is to inform a rate reduction target for Born Too Soon. METHODS: Countries were assessed for inclusion based on availability and quality of preterm prevalence data (2000-10), and trend analyses with projections undertaken. We analysed drivers of rate increases in the USA, 1989-2004. For 39 countries with VHHDI with more than 10,000 births, we did country-by-country analyses based on target population, incremental coverage increase, and intervention efficacy. We estimated cost savings on the basis of reported costs for preterm care in the USA adjusted using World Bank purchasing power parity. FINDINGS: From 2010, even if all countries with VHHDI achieved annual preterm birth rate reductions of the best performers for 1990-2010 (Estonia and Croatia), 2000-10 (Sweden and Netherlands), or 2005-10 (Lithuania, Estonia), rates would experience a relative reduction of less than 5% by 2015 on average across the 39 countries. Our analysis of preterm birth rise 1989-2004 in USA suggests half the change is unexplained, but important drivers include non-medically indicated labour induction and caesarean delivery and assisted reproductive technologies. For all 39 countries with VHHDI, five interventions modelling at high coverage predicted a 5% relative reduction of preterm birth rate from 9·59% to 9·07% of livebirths: smoking cessation (0·01 rate reduction), decreasing multiple embryo transfers during assisted reproductive technologies (0·06), cervical cerclage (0·15), progesterone supplementation (0·01), and reduction of non-medically indicated labour induction or caesarean delivery (0·29). These findings translate to roughly 58,000 preterm births averted and total annual economic cost savings of about US$3 billion. INTERPRETATION: We recommend a conservative target of a relative reduction in preterm birth rates of 5% by 2015. Our findings highlight the urgent need for research into underlying mechanisms of preterm births, and development of innovative interventions. Furthermore, the highest preterm birth rates occur in low-income settings where the causes of prematurity might differ and have simpler solutions such as birth spacing and treatment of infections in pregnancy than in high-income countries. Urgent focus on these settings is also crucial to reduce preterm births worldwide. FUNDING: March of Dimes, USA, Eunice Kennedy Shriver National Institute of Child Health and Human Development, and National Institutes of Health, USA.

Born too soon: preterm birth matters.

Urgent action is needed to address preterm birth given that the fi rst country-level estimates show that globally 15 million babies are born too soon and rates are increasing in most countries with reliable time trend data. As the fi rst in a supplement entitled "Born Too Soon", this paper focuses on the global policy context. Preterm birth is critical for progress on Millennium Development Goal 4 (MDG) for child survival by 2015 and beyond, and gives added value to maternal health (MDG 5) investments also linking to non-communicable diseases. For preterm babies who survive, the additional burden of prematurity-related disability may aff ect families and health systems. Prematurity is an explicit priority in many high-income settings; however, more attention is needed especially in low- and middle-income countries where the invisibility of preterm birth as well as its myths and misconceptions have slowed action on prevention and care. Recent global attention to preterm birth hit a tipping point in 2012, with the May 2 publication of Born Too Soon: The Global Action Report on Preterm Birth and with the 2nd annual World Prematurity Day on November 17 which mobilised the actions of partners in many countries to address preterm birth and newborn health. Interventions to strengthen preterm birth prevention and care span the continuum of care for reproductive, maternal, newborn and child health. Both prevention of preterm birth and implementation of care of premature babies require more research, as well as more policy attention and programmatic investment.

Born too soon: care before and between pregnancy to prevent preterm births: from evidence to action.

Providing care to adolescent girls and women before and between pregnancies improves their own health and wellbeing, as well as pregnancy and newborn outcomes, and can also reduce the rates of preterm birth. This paper has reviewed the evidence-based interventions and services for preventing preterm births, reported the findings from research priority exercise, and prescribed actions for taking this call further. Certain factors in the preconception period have been shown to increase the risk for prematurity and, therefore, preconception care services for all women of reproductive age should address these risk factors through preventing adolescent pregnancy, preventing unintended pregnancies, promoting optimal birth spacing, optimizing pre-pregnancy weight and nutritional status (including a folic acid-containing multivitamin supplement) and ensuring that all adolescent girls have received complete vaccination. Preconception care must also address risk factors that may be applicable to only some women. These include screening for and management of chronic diseases, especially diabetes; sexually-transmitted infections; tobacco and smoke exposure; mental health disorders, notably depression; and intimate partner violence. The approach to research in preconception care to prevent preterm births should include a cycle of development and delivery research that evaluates how best to scale up coverage of existing evidence-based interventions, epidemiologic research that assesses the impact of implementing these interventions and discovery science that better elucidates the complex causal pathway of preterm birth and helps to develop new screening and intervention tools. In addition to research, policy and financial investment is crucial to increasing opportunities to implement preconception care, and rates of prematurity should be included as a tracking indicator in global and national maternal child health assessments.

Born too soon: accelerating actions for prevention and care of 15 million newborns born too soon.

Preterm birth complication is the leading cause of neonatal death resulting in over one million deaths each year of the 15 million babies born preterm. To accelerate change, we provide an overview of the comprehensive strategy required, the tools available for context-specifi c health system implementation now, and the priorities for research and innovation. There is an urgent need for action on a dual track: (1) through strategic research to advance the prevention of preterm birth and (2) improved implementation and innovation for care of the premature neonate. We highlight evidence-based interventions along the continuum of care, noting gaps in coverage, quality, equity and implications for integration and scale up. Improved metrics are critical for both burden and tracking programmatic change. Linked to the United Nation's Every Women Every Child strategy, a target was set for 50% reduction in preterm deaths by 2025. Three analyses informed this target: historical change in high income countries, recent progress in best performing countries, and modelling of mortality reduction with high coverage of existing interventions. If universal coverage of selected interventions were to be achieved, then 84% or more than 921,000 preterm neonatal deaths could be prevented annually, with antenatal corticosteroids and Kangaroo Mother Care having the highest impact. Everyone has a role to play in reaching this target including government leaders, professionals, private sector, and of course families who are aff ected the most and whose voices have been critical for change in many of the countries with the most progress.

15 Million preterm births annually: what has changed this year?

Each year, more than 1 in 10 of the world's babies are born preterm, resulting in 15 million babies born too soon. World Prematurity Day, November 17, is a global effort to raise awareness about prematurity. This past year, there has been increased awareness of the problem, through new data and evidence, global partnership and country champions. Actions to improve care would save hundreds of thousands of babies born too soon from death and disability. Accelerated prevention requires urgent research breakthroughs.