Improving outcomes, quality, and access to health care for America's 70 million children and adolescents is a critical goal of health services research and central to the mission of the Agency for Healthcare Research and Quality (AHRQ, formerly the Agency for Health Care Policy and Research). Understanding the issues involved in improving the delivery of health care to children and adolescents requires a special research focus.
Background
Because children are growing and developing, they use care in ways that differ from the health care patterns of adults. Their important outcomes may differ, and, unlike adults, they are usually dependent on parents and others for access to care and evaluations of the quality of that care. Adolescents, in the transition to adulthood, also have their own unique health care needs, preferences, and patterns of use.
AHRQ maintains a very active coordinating effort to assure that issues related to children's and adolescents' health care are appropriately addressed throughout the Agency's research portfolio. In fiscal year (FY) 1998, AHRQ spent one-tenth of its $146 million appropriation on research and research training relating directly to children and adolescents. As AHRQ's budget has increased (to $171 million in FY 1999 and to a proposed $206 million in FY 2000), AHRQ expects to maintain or increase this commitment to children. In addition to this direct support of child health services research, the Agency is committed to providing national leadership to promote the use of research in improving health care for children and adolescents.
AHRQ's ability to sustain these commitments depends to a great extent on the determination of the research community to conduct rigorous research on health services topics of importance to children. This program brief gives an overview of some current AHRQ programs, activities, and priorities in health care research for children and adolescents.
Improving Outcomes
Health outcomes research involves developing measures of patient-focused outcomes and using those indicators to assess the effectiveness of clinical and organizational interventions and the effects of variations in health care policy at the local, State, and national levels.
Outcomes measurement. Through AHRQ support, outcomes researchers are developing better measures of health outcomes in children that encompass factors such as children's self-reports of symptoms, their overall health status, and their quality of life. Current challenges include the development and validation of outcome measures that address the diversity of children's developmental stages, illnesses and disabilities, and types of care.
Effectiveness of clinical care. Once patients and clinicians have accurate information on the outcomes of different care strategies, they can work with health care professionals to choose more effective strategies, often at a lower cost. For example, AHRQ-sponsored studies of oral rehydration treatment and inexpensive first-line antibiotics demonstrated that the outcomes of these treatments were as good as the results for more expensive therapies.
Among currently funded studies of outcomes in children's care is an examination of outcomes in adolescents after trauma (including effects on disability, quality of life, and psychological well-being). In a joint effort with other Federal agencies, several projects are examining the outcomes of mental health interventions taking place in the general health sector. AHRQ believes that children would benefit from additional research on the outcomes of many more clinical interventions that have not yet been investigated.
Organization and systems of care. Outcomes research goes beyond studying the effects of specific clinical interventions. One AHRQ-funded study, for example, found that high-risk infants who were born in hospitals with Level III neonatal intensive care units, which treat a high volume of such infants, are 38 percent less likely to die than similar infants born in other hospitals. Another AHRQ-supported study found better outcomes for children receiving dialysis when they received treatment in facilities experienced in caring for children. Several ongoing studies are examining the impact of the features of health plan policies on outcomes of care for chronically ill children. The effects of many variations in health care policies have yet to be addressed; many more studies in these areas are needed.
Enhancing Quality of Care
Quality measurement. Development and validation of clinical practice outcome measures is a necessary first step in developing quality measures for children's and adolescents' health care.
Several existing AHRQ quality measurement tools include measures specific to children. For example:
- COmputerized Needs-Oriented QUality Measurement Evaluation SysTem (CONQUEST), an information tool that helps health care systems and providers select the best measures of clinical quality, includes over 50 existing valid performance measures that apply to children.
- The Consumer Assessment of Health Plans (CAHPS®), a survey tool to measure patients' experiences with care, includes a module for children. In 1999 it is being used as a required measure in the Health Plan Employer Data and Information Set, a quality measurement tool for managed care organizations developed by the National Committee for Quality Assurance (NCQA).
AHRQ also provides advice and financial support to the Child and Adolescent Health Measurement Initiative, a joint private-sector quality improvement effort of the NCQA and Foundation for Accountability.
Ongoing AHRQ research is developing quality measures for pediatric oral health. A recent AHRQ request for quality measurement research focused in part on children and adolescents. AHRQ expects to fund several studies in response to this Request for Applications before the end of FY 1999. Remaining areas which need further research include quality measures for the full continuum of children's health care and specific attention to culturally sensitive measures and those that can be used across diverse care settings.
Quality improvement. Several AHRQ-supported projects are examining the effectiveness of alternative ways to improve quality of care for children. These studies address, for example, strategies for improving care for children who need preventive services; children with asthma; and newborns with jaundice. In April 1999, AHRQ and The David and Lucile Packard Foundation convened an expert meeting to seek ideas about how to move quality improvement strategies for children beyond individual institutions and small collaboratives and achieve rapid and sustainable improvements in quality.
Access, Use, and Cost of Care
Access. With nearly 11 million U.S. children under 18 uninsured, access to care remains an important challenge for many children and adolescents. An important tool for evaluating children's access to care is AHRQ's Medical Expenditure Panel Survey (MEPS), a continuing survey of American families' insurance coverage, use patterns, and expenditures for health care. Analyses of MEPS data from 1996, for instance, revealed that:
- Low-income children were most likely to be uninsured, and Hispanic children were far more likely than black or white children to be uninsured.
- About half of the uninsured children in 1996 were eligible for Medicaid but not enrolled.
- Children who were uninsured, Hispanic, or 13 to 17 years of age were the least likely children to have a usual source of health care, a good predictor of access to preventive services.
As health care markets continue to change in terms of insurance coverage and other sources of access, more rigorous research will be needed to monitor and understand access problems among children and adolescents.
Use and cost of care. As with adults, the cost of health care for children is very high. Children and adolescents incur $95 billion a year in personal health care costs. Patterns of health care use vary dramatically for children just as they do for adults.
AHRQ maintains the powerful Healthcare Cost and Utilization Project (HCUP), a rich resource of data on use of hospital services. Both the MEPS and the HCUP databases are being used by health services researchers to study national patterns in the use and costs of children's health care. AHRQ continues to strongly encourage researchers to use these and other data sources in their investigations.
Current AHRQ-sponsored studies of use and cost among children are examining referral patterns for Medicaid-covered children; nurse-managed primary care as an innovative strategy for low-income minority children; whether primary care access decreases children's emergency department visits for respiratory illnesses; and the relationships among health, health insurance, and welfare dynamics. AHRQ's recent Request for Applications (in partnership with The David and Lucile Packard Foundation) encouraged further study of the relationships among insurance dynamics, access, and health care use by low-income children. AHRQ's Health Services Research Program Announcement details the Agency's continuing interest in research in these areas.
Building Capacity
AHRQ is committed to building capacity for health services research concerning children and adolescents. In addition to its policy that strongly encourages all researchers to include children as part of their research populations, AHRQ has an ongoing program to support both predoctoral and postdoctoral training through National Research Service Award (NRSA) institutional training grants, NRSA postdoctoral fellowships, individual dissertation research awards, and other education awards. In addition, AHRQ supports faculty development awards in pediatric health services research and conferences aimed at building capacity and linkages among child health services researchers. AHRQ's Scholar-in-Residence in Child and Adolescent Health program provides a unique opportunity for researchers to enhance or develop areas of rigorous investigation in children's health services and to be in the midst of national policymaking in children's health care.
Translating Research Into Practice
AHRQ supports studies on children's and adolescents' health care research efforts on how important research findings can be translated quickly and well into practice.
Evidence-based health decisionmaking. Simply providing information on effectiveness is often not enough to successfully translate research findings into improvements in care. Previous research demonstrated, for example, that administering corticosteroid drugs to mothers in preterm labor was very effective in reducing illness in their babies, yet an AHRQ-funded study found that this intervention was greatly underused. The study investigated the barriers to using these drugs appropriately and successfully devised a strategy for addressing these barriers, increasing the use of this intervention from 20 percent to almost 70 percent over 3 years.
Access to evidence-based reviews and guidelines is one way to help clinicians and patients make decisions based on the best available knowledge. AHRQ's Evidence-based Practice Centers review and synthesize the evidence on specific health care topics, with ongoing reviews addressing relevant topics such as traumatic brain injury, acute otitis media, attention deficit hyperactivity disorder, and acne. Professional associations and others request these evidence reports and then use them in the local development of practice guidelines. Through AHRQ's National Guideline Clearinghouse™ (cosponsored with the American Medical Association and the American Association of Health Plans), health decisionmakers can view and compare over 150 guidelines on the management of an array of childhood conditions.
In addition, as part of the AHRQ-led effort to update the evidence-based Guide to Clinical Preventive Services, AHRQ will be re-examining the evidence base for clinical preventive services of importance to children and adolescents, including developmental screening, newborn hearing screening, screening for chlamydia, and counseling in reproductive health. AHRQ encourages researchers and other stakeholders to suggest topics ready for evidence reports and encourages the submission of pediatric guidelines to further build the National Guideline Clearinghouse™.
SCHIP and Medicaid. AHRQ is an active participant in the Administration's efforts to help States successfully implement the new State Child Health Insurance Program (SCHIP), the most significant effort to expand children's access to health insurance in over 30 years. In addition to support for research on insurance dynamics among low-income children, AHRQ supported the development of the American Academy of Pediatrics CHIP Evaluation Tool for States and is active in producing national performance measures for SCHIP. AHRQ reaches out to State SCHIP and Medicaid policymakers through its User Liaison Program, which brings evidence and experience to broad regional audiences.
For More Information
Information on children's health services research at AHRQ as well as detailed information on funding opportunities, including the text of all current grant announcements, is available online.
Further details on AHRQ's programs and priorities in child and adolescent health services research are available from:
Denise Dougherty, Ph.D.
Senior Advisor, Child Health
Agency for Healthcare Research and Quality
540 Gaither Road, Suite 2000
Rockville, MD 20850
Phone: (301) 427-1868
Fax: (301) 427-1561
E-mail: Denise.Dougherty@ahrq.hhs.gov
AHRQ Publication No. 00-P017
Replaces AHCPR Publication No. 99-P018
Current as of January 2000
Internet Citation:
Supporting Research that Improves Health Care for Children and Adolescents. January 2000. AHRQ Publication No. 00-P017. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/childbrf.htm
540 Gaither Road Rockville, MD 20850