The increasing prevalence of preterm birth in the United States is a complex public health problem that requires multifaceted solutions. Preterm birth is a cluster of problems with a set of overlapping factors of influence. Its causes may include individual-level behavioral and psychosocial factors, sociodemographic and neighborhood characteristics, environmental exposure, medical conditions, infertility treatments, and biological factors. Many of these factors co-occur, particularly in those who are socioeconomically disadvantaged or who are members of racial and ethnic minority groups. While advances in perinatal and neonatal care have improved survival for preterm infants, those infants who do survive have a greater risk than infants born at term for developmental disabilities, health problems, and poor growth. The birth of a preterm infant can also bring considerable emotional and economic costs to families and have implications for public-sector services, such as health insurance, educational, and other social support systems. Preterm Birth assesses the problem with respect to both its causes and outcomes. This book addresses the need for research involving clinical, basic, behavioral, and social science disciplines. By defining and addressing the health and economic consequences of premature birth, this book will be of particular interest to health care professionals, public health officials, policy makers, professional associations and clinical, basic, behavioral, and social science researchers. Table of Contents Front Matter Summary 1 Introduction SECTION I Measurement : 2 Measurement of Fetal and Infant Maturity Section I Recommendations SECTION II Causes of Preterm Birth: 3 Behavioral and Psychosocial Contributors to Preterm Birth 4 Sociodemographic and Community Factors Contributing to Preterm Birth 5 Medical and Pregnancy Conditions Associated with Preterm Birth 6 Biological Pathways Leading to Preterm Birth 7 Role of Gene-Environment Interactions in Preterm Birth 8 Role of Environmental Toxicants in Preterm Birth Section II Recommendations SECTION III Diagnosis and Treatment of Preterm Labor: 9 Diagnosis and Treatment of Conditions Leading to Spontaneous Preterm Birth Section III Recommendations SECTION IV Consequences of Preterm Birth: 10 Mortality and Acute Complications in Preterm Infants 11 Neurodevelopmental, Health, and Family Outcomes for Infants Born Preterm 12 Societal Costs of Preterm Birth Section IV Recommendations SECTION V Research and Policy: 13 Barriers to Clinical Research on Preterm Birth and Outcomes of Preterm Infants 14 Public Policies Affected by Preterm Birth Section V Recommendations 15 A Research Agenda to Investigate Preterm Birth References Appendix A Data Sources and Methods Appendix B Prematurity at Birth: Determinents, Consequences, and Geographic Variation Appendix C A Review of Ethical Issues involved in Premature Birth Appendix D A Systematic Review of Costs Associated with Preterm Birth Appendix E Selected Programs Funding Preterm Birth Research Appendix F Committee and Staff Biographies Index

The death of a child is a special sorrow. No matter the circumstances, a child's death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify "medicine with a heart." At worst, families' encounters with the health care system will leave them with enduring painful memories, anger, and regrets. When Children Die examines what we know about the needs of these children and their families, the extent to which such needs are?and are not?being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do not?and will likewise help all families who suffer with their seriously ill or injured child. Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child's life-threatening illness or injury. Table of Contents Front Matter Summary 1. Introduction 2. Patterns of Childhood Death in America 3. Pathways to a Child 4. Communication, Goal Setting, and Care Planning 5. Care and Caring From Diagnosis Through Death and Bereavement 6. Providing, Organizing, and Improving Care 7. Financing of Palliative and End-of-Life Care for Children and Their Families 8. Ethical and Legal Issues 9. Educating Health Care Professionals 10. Directions for Research References Appendix A: Study Origins and Activities Appendix B: Prognostication Scores Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents Appendix D: Cultural Dimensions of Care At Life Appendix E: Bereavement Experiences After the Death of a Child Appendix F: End-of-Life Care in Emergency Medical Services for Children Appendix G: Education in Pediatric Palliative Care Appendix H: Progress in Pediatric Palliative Care in New York State--A Demonstration Project Appendix I: Committee Biographical Statements Index

In recent decades, advances in biomedical research have helped save or lengthen the lives of children around the world. With improved therapies, child and adolescent mortality rates have decreased significantly in the last half century. Despite these advances, pediatricians and others argue that children have not shared equally with adults in biomedical advances. Even though we want children to benefit from the dramatic and accelerating rate of progress in medical care that has been fueled by scientific research, we do not want to place children at risk of being harmed by participating in clinical studies. Ethical Conduct of Clinical Research Involving Children considers the necessities and challenges of this type of research and reviews the ethical and legal standards for conducting it. It also considers problems with the interpretation and application of these standards and conduct, concluding that while children should not be excluded from potentially beneficial clinical studies, some research that is ethically permissible for adults is not acceptable for children, who usually do not have the legal capacity or maturity to make informed decisions about research participation. The book looks at the need for appropriate pediatric expertise at all stages of the design, review, and conduct of a research project to effectively implement policies to protect children. It argues persuasively that a robust system for protecting human research participants in general is a necessary foundation for protecting child research participants in particular. Table of Contents Front Matter Summary 1 Introduction 2 The Necessity and Challenges of Clinical Research Involving Children 3 Regulatory Framework for Protecting Child Participants in Research 4 Defining, Interpreting, and Applying Concepts of Risk and Benefit in Clinical Research Involving Children 5 Understanding and Agreeing to Children's Participation in Clinical Research 6 Payments Related to Children's Participation in Clinical Research 7 Regulatory Compliance, Accreditation, and Quality Improvement 8 Responsible Research Involving Children References Appendix A: Study Origins and Activities Appendix B: State Regulation of Medical Research with Children Adolescents: An Overview and Analysis Appendix C: Health Care Privacy and Conflict-of-Interest Regulations Relevant to Protection of Human Participants in Research Appendix D: Glossary, Acronyms, and Laws and Regulations Appendix E: Committee Biographical Statements Index