AHCPR Research on Children's Health

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During the past 25 years, health services researchers have made impressive strides in developing methods to understand the organization and financing of health care systems and to assess the effectiveness of health care services and their impact on patient outcomes. Most of the work, however, focuses on health care for adults, leaving important gaps in the understanding of health care services for children. In response to the need for information, the Agency for Health Care Policy and Research (AHCPR), the health services research arm of the Federal Government, has undertaken to build an agenda of research on children's health.

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Contents

Overview
   1. Introduction
   The Need for a Children's Health Research Agenda
   Examples of New Findings
   Continuing to Expand the Research Base
2. Highlights of AHCPR-Sponsored Research on Children's Health
   Childbirth/Infant Health
   Health Care Services Organization, Access, Use, Quality, and Costs
   Measures of Children's Health Status
   Pediatric Asthma
   Pediatric HIV/AIDS
   Emergency Medical Services for Children
   Pain Management
   Immunization/Disease Prevention for Children
   Otitis Media
   Mental Health and Substance Abuse
   Conference Grants
   Evidence Reports
3. Additional Information

Overview

Most children enjoy good health. Nonetheless, all children can benefit from appropriate and timely health care for common illnesses and injuries of childhood and from preventive services such as immunizations. In addition, an estimated 3 to 30% of children suffer from chronic illnesses and disabilities that require ongoing care.

Over the past quarter century, health services researchers have built an impressive research base in adult health. Recently, the U.S. Congress asked the Agency for Health Care Policy and Research (AHCPR) to examine the health services research issues important to children. This program note is an abbreviated version of the report AHCPR produced in response to Congress' request. The program note summarizes why children's health requires a special research focus, where the biggest gaps in knowledge are, and the steps AHCPR has taken to improve the research base on children's health care.

We encourage the entire health services research community to apply their talents to the emerging field of child health services research and to work with us at AHCPR to improve the health of the Nation's young citizens. To encourage more work on children's health issues, AHCPR recently announced in the NIH Guide to Grants and Contracts that it encourages all applicants to include children newborn through age 21 in their study populations (select for online announcement). In addition, AHCPR recently released for public use the first 6 months of data from the 1996 household component of the Medical Expenditure Panel Survey.

We invite you to visit AHCPR's Web site (http://www.ahrq.gov/) for up-to-date information on the Agency's research on child health and other topics including, funding announcements, publications, conferences, and other resources.

John M. Eisenberg, M.D.
Administrator

Lisa A. Simpson, M.B., B.Ch.
Deputy Administrator

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1. Introduction

The Need for a Children's Health Research Agenda

Significant differences between the health care needs of children and adults mean that the dramatic changes now affecting the organization, financing, and delivery of health services may have differing effects on children than on adults. Children are different from most adults in their patterns of use of health services; in their distinctive developmental vulnerabilities and strengths; and in their dependence on others for access to care and financial resources.

Rapid development throughout childhood—from the dramatic developments in every day of infancy, to the profound biological, emotional, intellectual, and social transformations of adolescence—can complicate the delivery of developmentally appropriate services to children. Furthermore, there are certain "vulnerable periods" during childhood when appropriate care for particular illnesses is essential to growth and normal development. If these illnesses are not prevented, or treated when they first manifest, the opportunity to minimize damage to the child's health can be lost, leading to lifelong and often expensive disabilities.

Most children enjoy relatively good health and primarily require appropriate and timely care for common childhood occurrences such as ear infections and injuries, and preventive services such as immunizations for formerly deadly diseases such as measles, polio, and whooping cough. Some children require care for more common and chronic child illnesses such as asthma, and a smaller percentage have relatively rare disorders and disabling conditions that may require special attention over a lifetime. These rare but costly conditions include diseases such as cystic fibrosis, cerebral palsy, childhood cancers, and sickle cell disease. Biomedical and behavioral researchers are making substantial advances in understanding the biomedical aspects of many childhood diseases and conditions, and in developing impressive therapies with the potential to increase the lifespan, and improve the quality of children's lives.

Child health services research is a multidisciplinary field of inquiry that examines the use, costs, quality, accessibility, delivery, organization, financing, and outcomes of health care services to increase knowledge and understanding of the structure, processes, and effects of health services for individual children and populations of children. Many questions still remain about how to measure outcomes of child health interventions in ways that fairly represent the interventions' costs and benefits potentially over children's lifetimes.

Very few existing quality of care measures are relevant to children. There is a critical need for measures to assess the relative effectiveness of both new treatments and treatments that are in common use but have never been systematically evaluated. Building on the base of outcomes and effectiveness research, more refined vehicles are needed to evaluate access, costs, effectiveness, and quality of care in a rapidly changing health care system. Little of the needed research is likely to occur unless steps are taken to enlarge and improve the very small cadre of health services researchers now active in child health services research.

This publication includes key findings of recent Agency-supported research on child health, and highlights current Agency activities designed to improve the health of children.

Examples of New Findings

In 1996, AHCPR-supported research findings with potentially significant implications for children's health included:

• There are substantial geographic variations in rates of hospitalizations for childhood asthma. Variations suggest that practitioners in different areas are providing care differently to patients who are basically alike.
• Strong associations exist between low birthweight and several common maternal vaginal and urinary tract infections during pregnancy. These associations suggest the need for increased maternal screening to reduce low birthweight in babies.
• High-risk infants treated in more sophisticated neonatal intensive care units (NICUs) had improved infant health outcomes compared with those treated in hospitals with lower level care units or no NICUs. This finding has implications for urban areas, and for directing high-risk infants to appropriate care.

The goal of building AHCPR's child health services research agenda is not only to understand but to improve the organization, financing, delivery, quality, and outcomes of health care provided to children. These and other research findings will be widely disseminated and used to inform the research of the future.

Continuing To Expand the Research Base

Building on experts' advice and past research findings, AHCPR is currently making several substantial commitments to continue to expand the research base and, as encouraged by Congress, will continue to commit resources as appropriate.

Highlights of current activities include:

• Newly funded research in child health. In 1996, AHCPR funded new research on child health status measures, managed care, preventive care, referrals to specialists, and other topics.
• Childhood asthma. This new research includes a 5-year randomized clinical trial being sponsored collaboratively with the National Heart, Lung, and Blood Institute (NHLBI). This research will test the cost-effectiveness of NHLBI's clinical practice guidelines on childhood asthma.
• Referrals to subspecialists. One of the new research studies addresses the important area of whether and when children require referrals to pediatric subspecialists.
• Development of quality of care measures. As directed by Congress, AHCPR is collaborating with the Association for Health Services Research, the Centers for Disease Control and Prevention, the National Institutes of Child Health and Human Development, and other private and public partners on a nationwide conference to develop quality of care measures and a long-term quality measurement research agenda relevant to children. Results of this conference will be widely disseminated and should stimulate the development of new measures of child health care quality.
• Emergency medicine initiative. In 1995, AHCPR and the Health Resources and Services Administration (HRSA) jointly awarded grants totaling $2.5 million for research leading to improvements in emergency medical services for children.

AHCPR is dedicated to providing the same high-quality research methods and studies to child health services that health services researchers have contributed to adult health. The agenda development process generated new interest in children's health services research, and is beginning to revitalize the existing network of researchers working in this area. Children and their families will benefit from the insights and tools new research findings can provide. The work that is being encouraged and supported by Congress will provide an important benchmark against which progress toward the shared goal of better health care for all children can be measured.

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