# AHCPR Research on Children's Health

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 During the past 25 years, health services researchers have made impressive strides in developingmethods to understand the organization and financing of health care systems and to assess theeffectiveness 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 healthcare services for children.  In response to the need for information, the Agency for Health CarePolicy and Research (AHCPR), the health services research arm of the Federal Government, hasundertaken 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 Base2. Highlights of AHCPR-Sponsored Research on Children'sHealth   Childbirth/Infant Health   Health Care Services Organization, Access, Use, Quality, andCosts   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 Reports3. Additional Information

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## Overview

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

Over the past quarter century, health services researchers have built an impressive research base inadult health.   Recently, the U.S. Congress asked the Agency for Health Care Policy and Research (AHCPR) to examine the health services researchissues important to children.  This program note is an abbreviated version of the report AHCPRproduced in response to Congress' request.   The program note summarizes why children's healthrequires a special research focus, where the biggest gaps in knowledge are, and the steps AHCPRhas 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 emergingfield of child health services research and to work with us at AHCPR to improve the health of theNation's young citizens.   To encourage more work on children's health issues, AHCPR recentlyannounced in the *NIH Guide to Grants and Contracts* that it encourages all applicants toincludechildren newborn through age 21 in their study populations (select for online announcement).   In addition, AHCPR recentlyreleased for public use the first 6 months of data from the 1996 household component of theMedical Expenditure Panel Survey.

We invite you to visit AHCPR's Web site (http://www.ahrq.gov/) for up-to-date informationon 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 dramaticchanges now affecting the organization, financing, and delivery of health services may havediffering effects on children than on adults.  Children are different from most adults in theirpatterns 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 developmentthroughout childhood—from the dramatic developments in every day of infancy, to theprofoundbiological, emotional, intellectual, and social transformations of adolescence—cancomplicate thedelivery of developmentally appropriate services to children.  Furthermore, there are certain"vulnerable periods" during childhood when appropriate care for particular illnesses is essential togrowth and normal development.  If these illnesses are not prevented, or treated when they firstmanifest, the opportunity to minimize damage to the child's health can be lost, leading to lifelongand often expensive disabilities.

Most children enjoy relatively good health and primarily require appropriate and timely care forcommon childhood occurrences such as ear infections and injuries, and preventive services suchas 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 asmaller percentage have relatively rare disorders and disabling conditions that may require specialattention 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 researchersare making substantial advances in understanding the biomedical aspects of many childhooddiseases and conditions, and in developing impressive therapies with the potential to increase thelifespan, and improve the quality of children's lives. 

Child health services research is amultidisciplinary field of inquiry that examines the use, costs, quality, accessibility, delivery,organization, financing, and outcomes of health care services to increase knowledge andunderstanding of the structure, processes, and effects of health services for individual children andpopulations of children.  Many questions still remain about how to measure outcomes of childhealth interventions in ways that fairly represent the interventions' costs and benefits potentiallyover 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 treatmentsand treatments that are in common use but have never been systematically evaluated.  Building onthe base of outcomes and effectiveness research, more refined vehicles are needed to evaluateaccess, costs, effectiveness, and quality of care in a rapidly changing health care system.  Little ofthe needed research is likely to occur unless steps are taken to enlarge and improve the very smallcadre of health services researchers now active in child health services research.

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

### Examples of New Findings

In 1996, AHCPR-supported research findings with potentially significant implications forchildren'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 patientswho are basically alike.
-     Strong associations exist between low birthweight and several common maternal vaginalandurinary tract infections during pregnancy.  These associations suggest the need for increasedmaternal screening to reduce low birthweight in babies.  
- High-risk infants treated in more sophisticated neonatal intensive care units (NICUs) hadimproved infant health outcomes compared with those treated in hospitals with lower levelcare units or no NICUs.  This finding has implications for urban areas, and for directinghigh-risk infants to appropriate care.

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

### Continuing To Expand the Research Base

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

Highlights of current activities include:

- Newly funded research in child health .  In 1996, AHCPR funded new research onchildhealth status measures, managed care, preventive care, referrals to specialists, and othertopics.
- Childhood asthma .  This new research includes a 5-year randomized clinical trialbeingsponsored collaboratively with the National Heart, Lung, and Blood Institute (NHLBI). Thisresearch will test the cost-effectiveness of NHLBI's clinical practice guidelines on childhoodasthma.
- Referrals to subspecialists .  One of the new research studies addresses the important area ofwhether and when children require referrals to pediatric subspecialists.
-  Development of quality of care measures.   As directed by Congress, AHCPRiscollaborating with the Association for Health Services Research, the Centers for DiseaseControl and Prevention, the National Institutes of Child Health and Human Development, andother private and public partners on a nationwide conference to develop quality of caremeasures and a long-term quality measurement research agenda relevant to children.  Resultsof this conference will be widely disseminated and should stimulate the development of newmeasures of child health care quality.
-  Emergency medicine initiative .  In 1995, AHCPR and the Health Resources andServicesAdministration (HRSA) jointly awarded grants totaling $2.5 million for research leading toimprovements in emergency medical services for children. 

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

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