Jane S. Durch, Editor
Committee on Maternal and Child Health Under Health Care Reform
Board on Children and Families
Commission on Behavioral and Social Sciences and Education
National Research Council / Institute of Medicine and
Board on Health Promotion and Disease Prevention
Institute of Medicine
National Academy Press
Washington, D.C. 1994
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--> Chapter 3— Protecting and Improving Quality of Care for Children Under Health Care Reform Workshop Highlights Jane S. Durch, Editor Committee on Maternal and Child Health Under Health Care Reform Board on Children and Families Commission on Behavioral and Social Sciences and Education National Research Council / Institute of Medicine and Board on Health Promotion and Disease Prevention Institute of Medicine National Academy Press Washington, D.C. 1994
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--> Contents Summary 51 Introduction 52 Assessing the Quality of Care 53 Assessing Children's Health and Health Care 54 Critical Differences Between Children and Adults 54 More than Medical Care for Children's Health 55 Conceptual and Methodological Considerations 56 Assessing Quality at Several Levels 57 Accountability for Children's Care 58 Developing and Enhancing Resources for Assessing Children's Care 59 Conclusions 60 References 60
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--> Summary Changes in the financing and delivery of health care across the United States make it particularly important to ensure that the quality of care is both protected and improved. The Institute of Medicine (IOM) has defined quality of care as ''the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge (Institute of Medicine, 1990). A workshop organized by the National Research Council and IOM identified several critical factors that affect our ability to protect and improve the quality of health care for children in particular. Valuable, but still limited, techniques and tools are available to evaluate certain aspects of care for adults. Some resources are available to guide and monitor children's care, but assessing the quality of children's health care poses special challenges. The workshop highlighted the importance of certain critical differences between children and adults, the contribution of many services beyond medical care to a child's healthy development, and conceptual and methodological issues. Critical differences between children and adults include the complex and continuing developmental changes that occur between birth and adulthood. Care for children emphasizes protecting and promoting healthy physical and psychosocial development whereas much adult care responds to illness. To assess children's care, ways must be developed to identify the separate effects of health care and developmental changes. Children also are dependent on adults and community institutions (e.g., schools) to protect and promote their health and well-being. Assessments of their health status cannot, therefore, rely on the criterion used for adults of '' independent functioning." Assessments also often rely on adult perceptions of a child's condition, which may differ from the child's perceptions or from those of other adults. Children's patterns of illness and injury differ from those of adults. Overall, children are healthier than adults, and therefore, assessments of children's care must focus more on preventive care than assessments for adults. The small proportion of children who have chronic illnesses have a more varied array of illnesses than do adults. Monitoring the quality of children's care needs to include the contributions of medical care plus other services that help promote optimal physical and psychosocial development. Medical care can mitigate some of the impact of socioeconomic and environmental health threats and can help children gain access to additional services that can improve their health and well-being. Successful integration of health care with educational and social services appears valuable but techniques are needed to assess the quality of those integrated services.
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--> Additional indicators are needed to assess the quality of children's health care. The few that are commonly used much on only limited aspects of the care given to children. Health status measures suitable for guiding policy and assessing the outcomes of care also require further development. In addition, important methodological problems need to be resolved, including measuring the impact of prevention, developing statistically reliable measures to assess the care of small numbers of children with specific chronic illnesses or other special health care needs, and developing techniques for risk adjustment that are appropriate for all aspects of pediatric care. Assessments of health and health care can be made from three perspectives: the individual patient and provider, health plan performance, and systems of services for entire communities and states. Further development of measures and tools for all three forms of assessment is still needed. Establishing accountability for the quality of the care that children receive is a special concern. Simply measuring performance does not ensure that problems will be corrected. Well-established criteria to define "medically necessary" or clinically appropriate care for children are not available, and administrative and legal remedies may not offer adequate protection for children in low-income families or other vulnerable populations. The array of public and private services that contribute to children's health and development need coordination and oversight. Workshop participants felt that federal and state health care reforms need to include mechanisms that will lead to action by health plans, public health agencies, or other entities to respond to identified problems. Discussions throughout the workshop emphasized the need for further research to develop better techniques and tools to support assessments of the quality of children's health care. The workshop discussions also drew attention to the need to develop better data, data collection, and data systems to support efforts to monitor and improve children's care. Introduction As actions at the state and local levels and in the public and private sectors change the financing and delivery of health care across the United States, there is concern that the quality of care must be protected and enhanced.1 Anticipated federal health care reform legislation offers the possibility of important changes in health care financing and increased access to care; it also offers a greater opportunity than in the past to ensure that the essential function of monitoring quality of care is explicitly addressed. Successful monitoring of care for adults will not be simple, but monitoring the quality of health care for children2 poses 1 The Institute of Medicine has addressed concerns about quality in all aspects of health care in a white paper issued by the IOM Council in July 1994 (Institute of Medicine, 1994). 2 As used in this report, the term "children" encompasses infants through adolescents.
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--> special challenges. Measures are needed to assess not only treatment of illness but also preventive care and promotion of optimal physical and psychosocial development over the roughly 20-year period from birth to adulthood. In response to concern that important aspects of children's health and health care require greater attention as federal health care reform proposals take final shape and as other aspects of federal health programs are developed, the National Academy of Sciences' National Research Council (NRC) and Institute of Medicine (IOM) held an invitational workshop on July 7–8, 1994. At the request of the Office of the Assistant Secretary for Health in the U.S. Department of Health and Human Services, the second day of the workshop focused on protecting and improving the quality of care for children. This brief report, prepared under the guidance of the workshop steering committee, summarizes the major points raised in presentations and discussion. Assessing the Quality of Care As defined by the IOM, "quality of care is the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge. This definition reflects several important points: the process of care (health services) can be linked to the outcome of care (health or health status), quality assessments should consider care for individuals and that received by defined groups (e.g., members of a health plan or an entire community), and care should be guided by accepted professional standards and by preferences expressed by patients (or their families). The definition applies to health services to meet physical or psychosocial needs and to services offered by many kinds of health care providers. Assessments of care can identify problems in the form of poor health outcomes or inappropriate health services (use of unnecessary or ineffective care, lack of needed care, or shortcomings in technical and interpersonal aspects of care). Identifying poor health outcomes is critical for evaluating the effectiveness of care and shaping policy. To improve outcomes, however, policy makers and health care providers must have information about the processes of care that produced those outcomes. Work over the past 30 years has led to the development of valuable but still limited techniques and tools for assessing and improving the quality of health care. Presentations at the workshop reviewed some of the measures that have been developed for children and pointed out that less progress has been made than for adults, in part because of factors such as limited funding for research on children's health and special ethical concerns that arise for research involving children. Increasing interest in monitoring quality and in reporting measures of health care performance (e.g., with health plan report cards) is helping to draw greater attention to the need to develop better quality assessment techniques and tools for
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--> both adults and children. Workshop participants emphasized, however, that efforts to monitor and improve the quality of care should move ahead using the available tools, even though perfect measures are not yet available. Assessing Children's Health and Health Care Workshop discussions highlighted several factors that contribute to the complexity of assessing children's health and health care: certain critical differences between children and adults; the impact on a child's healthy development of services beyond the scope of traditional medical care; and conceptual and methodological issues in developing quality measures for children. Critical Differences Between Children and Adults Three differences between children and adults were cited as particularly significant for assessing health status and health care: Developmental changes. Between birth and adulthood, children experience a complex and continuing process of physical and psychosocial development, with certain vulnerable periods in which appropriate care is essential for optimal developmental progress. Even subtle shifts from what would have been a child's "normal" developmental track may have a life-long impact. Because some of the criteria for healthy functioning and for appropriate care change as children move through this developmental process, techniques for assessing their health status and quality of care need to reflect those changes. Among adults, adverse effects of illness and the compensatory effect of health care can often be assessed against a relatively stable level of functioning immediately before the illness. Among children, however, the effects of an illness and of health care can be much harder to judge against the background of developmental changes that occur within a wide range of normal functioning. For some children, a long-term assessment process may be needed to determine the full impact of either health care or illness. Dependency. Children are inherently dependent on their parents and other adults as well as community institutions (including schools) to protect and promote their health and well-being. Therefore, the element of "independent functioning," which is a critical factor in judging adult health status, does not apply to children. The degree of dependency decreases over time, but in large measure children must rely on adults, as individuals or through society's various institutional structures, to provide care that promotes normal development, to recognize disorders and obtain treatment, and to define pre-and posttreatment functioning. Some workshop participants pointed out, however, that adults' perceptions of a child's condition may not match the child's perceptions; even
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--> among adults, the judgments of parents and health professionals may differ from each other. Patterns of illness and injury. Children have a characteristic epidemiology of health and illness. Most children are fundamentally healthy and require care that emphasizes preventive services, such as immunizations and monitoring of physical and psychosocial growth and development. By comparison, adult care is based much more on response to illness. Patterns of serious illness in children, especially chronic illness, also differ from those in adults. Relatively small numbers of children experience a diverse array of conditions in contrast to the larger number of adults who, in general, experience a more limited and more predictable range of disorders. The diversity of children's conditions means that few health professionals have the expertise or resources to provide the full range of care for all such conditions and that families may need help gaining access to specialized support services. Furthermore, these children need care not only for the illness itself but also to minimize possible adverse effects of the illness on overall development. More than Medical Care for Children's Health Workshop participants emphasized that optimal health and development for many children requires not only medical care hut also other health and social services both to prevent problems and to ameliorate the effects of conditions that do have an adverse impact on children. The discussions pointed to the need to consider the contribution of those services in addition to medical care in at least some assessments of the quality of children's care. Many important health threats lie in socioeconomic and environmental factors, such as poverty and community violence, that are not the traditional targets of clinical preventive services. If these risk factors are not addressed, however, the health care system must often provide acute or chronic care for conditions such as injuries, exposure to toxic substances (e.g., lead), or emotional disturbances. For some children, a range of social services may be needed to provide comprehensive care for a chronic illness, to ensure adequate nutrition, to promote a safe home environment, or to respond successfully to certain "behavior" problems that may not typically be viewed as health related. Even though medical care cannot "cure" social and environmental problems, it can mitigate some of the adverse health effects and facilitate access to the variety of other services that can promote better health and development for children. Some of the services may be available from health plans or other health care providers, while others may be provided by public health agencies, often with federal support such as Maternal and Child Health Block Grant funds. Education and school-based services, which often are more removed from the realm of medical care, also make important contributions to a child's health and developmental progress.
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--> The problem of injury, a leading cause of death among children, clearly illustrates the need to combine personal health services with broader public health and community efforts. The health care system provides acute, and sometimes rehabilitative and chronic, care for injured children, but its contribution to prevention is primarily counseling for parents and children about avoidable risks. Effective prevention also depends on activities such as public education, enacting and enforcing safety laws (e.g., for bicycle helmets, pool fencing, or sale of alcohol to minors), and special programs such as school-based violence prevention training for children. Many workshop participants felt that successful integration of health care, education, and social services is particularly valuable in meeting children's unique health and developmental needs. The diversity of these services, however, makes it less clear how to monitor the quality of the care that they provide. Health plans may have an interest in assessing how well such services are meeting the needs of member children, but public health agencies have a broader perspective that can enable them, in collaboration with providers in the private sector, to make overall assessments of these services for all children in a state or community. Conceptual and Methodological Considerations Rates of immunization, low birth weight, and hospitalization for asthma are among the handful of indicators used to monitor children's health care. These measures touch on only a few aspects of the care given to children, but there is little consensus about the merits of other measures. An informal survey of pediatricians, which was described at the workshop, has produced suggestions that the process of routine preventive care be monitored on the basis of procedures such as vision screening, assessment of language development, or measurement of weight, height, and head circumference. Although monitoring the quality of care focuses on process, the outcomes of care—usually assessed with health status measures—must also be considered. Workshop participants emphasized that, for children, the concepts of health and health outcomes are not easily defined but must be broader than the presence or absence of disease. The elements of developmental change and dependency, which were discussed above, contribute to the complexity of assessing children's health status and functional outcomes. Strong support was voiced at the workshop for the development of generic measures, but some participants saw merit in disease-specific measures as well. Some tools for health status assessment are less appropriate for clinical evaluation and are intended for community-based assessments and policy guidance. Many national assessments rely on the National Health Interview Survey, but the sample size is too small to provide data for state-level or condition-specific assessments. Developing reliable and valid process measures poses several methodological problems. An assessment of preventive care, for example, must contend with
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--> two issues: how to measure events that do not occur (or occur very rarely) because that care was given, and how to evaluate effects of care over a very long time span. Some measures may be useful but not appropriate for children of all ages: for example, immunization rated for 2-year-old reflect care being given to infants and toddlers but do not provide information about care that adolescents are receiving. Children with chronic illnesses or other special health care needs receive substantial amounts of care, but the small numbers of such children make it hard to develop measures with adequate statistical power to detect meaningful differences over time or among health plans. One of the anticipated uses of quality measures is to facilitate comparisons of the care provided by health plans. For such comparisons to be fair, adjustments must be made for significant differences in the underlying health of the populations served by plans or for other factors outside of the control of health plans (e.g., members' socioeconomic characteristics or differences in benefit packages selected by employers) that might lead to entirely appropriate differences in care or outcomes of care. Available adult-based adjustment techniques may not be satisfactory for children and should not be used unless they can be validated for a pediatric population. Work done in pediatric populations has largely focused on mortality risks among critically ill or injured children. Because such methods apply to only a small number of children, more broadly based approaches are needed as well. Assessing Quality at Several Levels Assessments of the quality of health and health care for children (or adults) can be made from at least three perspectives: the individual patient and provider, health plan performance, and systems of services for entire communities and states. Workshop participants emphasized the importance of the broad perspective of population-based assessments, which make it possible to examine patterns of care and identify gaps in services. Health plans, which can examine the care provided to the population represented by their members, can use assessments to obtain information to support their internal quality improvement programs. Those assessments can also help purchasers and consumers of health services select among competing plans. Individual health plans are not, however, in a position to assess whether a community's entire population has health insurance coverage, and they may not accept responsibility for assessing how well plan services mesh with those that children may receive (or need) from other sources. Communities and states seem to be the levels at which overall assessments should be made. Public health agencies can work with health plans and other private providers to make assessments, but they will need adequate financial and technical resources to do so. The tools (appropriate measures and survey instruments or other data collection systems) needed for all but the most basic assess-
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--> ments require further development. Reliable national-level data also need to be collected to monitor the overall health of children and families. Accountability for Children's Care Assessing quality of care does not by itself ensure that problems that are identified will be corrected. Workshop participants expressed concern that without adequate means to monitor children's care, a particularly vulnerable population could be put at even greater risk in the midst of a changing health care system that tends to focus on adult needs and may face stronger incentives to control costs than lo improve care. To the extent that quality assessments are possible, they will promote correction of some problems. For example, given the appropriate information, many health care providers will take what steps they can to make improvements. Publication of performance measures for health plans may encourage those with lower ratings to make improvements so that they can compete successfully with other plans. If children's unique needs are considered, accreditation standards established by private, voluntary groups can also promote improvements in quality of care provided by hospitals, health plans, or other providers that want to achieve accredited status. Since it is not possible to monitor all aspects of care, accreditation standards may also promote good quality of care through attention lo the structural aspects of health care (e.g., numbers and qualifications of providers, availability of beds, and proper equipment). Many workshop participants felt, however, that these mechanisms would not be sufficient to protect and improve the quality of children's care. They saw a need for federal and state health care reforms to establish other means to ensure that health plans or other responsible parties take action to correct any deficiencies in the care they are providing to children. Discussions pointed to two particularly important motivations for public sector involvement in establishing accountability for the quality of children's care. The first factor is a need for a recognized standard of care for children that can be used to establish appropriate criteria for "medically necessary" care. The currently limited amount of science-based evidence for formulating pediatric practice guidelines may lead health plans to rely on adult-oriented standards for medical necessity. Those standards may result in care that is not in the best interests of children by, for example, offering access to adult rather than pediatric specialists or limiting coverage for home-based care, which could avoid the adverse developmental effects of prolonged hospitalization. There was also concern that children in low-income families and other vulnerable groups (including adolescents who may be alienated from their families) could have difficulty taking advantage of administrative and legal mechanisms to challenge health plan judgments on the medical necessity of specific kinds of care. The second motivation for public sector involvement in monitoring quality
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--> of care is the need for coordination and oversight of the full array of public and private services that contribute to children's health and development. Unless a public health department or other entity is given explicit responsibility for monitoring and improving this package of services, the separate components may not mesh effectively and children may not benefit as they should from those services. Some at the workshop felt that authority for all quality oversight should rest with state public health agencies. They noted that the IOM has identified as core public health functions assessing health status and health needs and assuring that high quality services are available to meet those needs.3 Developing and Enhancing Resources for Assessing Children's Care Throughout the workshop, presentations and discussions pointed to the need for federal assistance to support research to develop appropriate techniques and tools for assessing the quality of children's health care. Some of these research needs are noted here. Research is needed to develop measures of health status and functional outcomes that are suited to monitoring the impact of health care on children as well as measures that can meet other clinical and policy needs. Studies must continue to examine the effectiveness of various kinds of preventive, curative, and rehabilitative care across the pediatric age range. More and better clinical practice guidelines for pediatric care tire needed. Work is also needed to develop ways to promote the integration of the broad range of services that contribute to the health and well-being of children and to assess and improve the quality of this system and the services it is providing. A second theme that emerged from the workshop was the need to develop better data, data collection, and data systems to support efforts to monitor and improve care. Some states (e.g., Massachusetts and Washington) are already taking steps to ensure that they have statewide data systems and data reporting requirements that will allow them to monitor health care. Other states and communities may need technical assistance to establish assessment and improvement programs. Better use of existing public and private data sources and data systems may make it possible to develop needed information in a particularly cost-effective manner. Relevant federal and state data, for example, could be made more readily available to communities. National guidelines will be needed to promote comparability of quality data across the country. Several specific suggestions were made for improving the usefulness of national surveys and data systems (e.g., vital statistics) for monitoring children's 3 These functions were first identified in The Future of Public Health (Institute of Medicine, 1988). They were recently reaffirmed in the IOM Council's July 1994 white paper. America's Health in Transition: Protecting and Improving Quality (Institute of Medicine, 1994).
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--> health status and the impact of health care reform: evaluating and improving measures of child health, developing the capability to assess both short-and long-term effects of illness and health care on children's health status, instituting longitudinal data collection (e.g., through panel surveys), expanding national surveys so that they can produce state-level estimates, and developing the capability specifically to monitor vulnerable child populations. Conclusions As changes are made in the health care system to control costs and improve access to services, changes should also ensure that the quality of care is protected and improved. To ensure that children receive appropriate care, the available, but still limited, tools for assessing their health status and health care need to be used as effectively as possible. Development of a more comprehensive set of quality indicators will require rigorous studies that examine the effectiveness of various elements of children's care. Programs to monitor quality of care will need to establish accountability for correcting problems that may be found and mechanisms to ensure that improvements are made. References Institute of Medicine 1988 The Future of Public Health. Division of Health Care Services. Washington, D.C.: National Academy Press. 1990 Medicare: A Strategy for Quality Assurance. K.N. Lohr. ed. Vol. 1. Division of Health Care Services. Washington, D.C.: National Academy Press. 1994 America's Health in Transition: Protecting and Improving Quality . Division of Health Care Services. Washington. D.C.: National Academy Press.