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Wise PH, Huffman LC, Brat G. A Critical Analysis of Care Coordination Strategies for Children With Special Health Care Needs. Rockville (MD): Agency for Healthcare Research and Quality (US); 2007 Jun. (Technical Reviews, No. 14.)

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A Critical Analysis of Care Coordination Strategies for Children With Special Health Care Needs.

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Goals and Objectives

The goal of this technical review is to examine critical issues of care coordination for children with special health care needs. It is intended to supplement the more comprehensive Evidence-based Practice Center (EPC) report on care coordination currently under preparation. Unlike the EPC report, the intention of this technical review is not comprehensiveness but rather strategic guidance regarding critical aspects of care coordination for this special group of children. While this more focused purview is mandated by the reduced scope of the technical review format, it also reflects the need to elevate selected issues of particularly urgent concern for practice or policy.

Experts in the field such as Perrin and colleagues1 and Stein2 have described in detail the requirements for providing coordinated care for children with complex medical needs. In addition, professional organizations such as the American Academy of Pediatrics and a variety of advocacy groups and service programs for families with children with special health care needs have developed care coordination strategies and developed very useful guidance materials regarding this issue.3, 4 These sources, while embracing general principles of care coordination that are relevant for all populations and age groups, emphasize those elements of care that are of particular importance for children with special health care needs. Although quite varied, they tend to be due to (1) the dependence of children on parents or other adult caretakers; (2) the distinct epidemiology of childhood and its implications for the organization of health services; (3) the developmental nature of child health problems and the need to link care with educational institutions; and (4) the special financial basis for child health and related services. The inherent dependence of children on adults acting on their behalf adds a level of complexity to care coordination efforts in that the facilitation, monitoring, and at times the enforcement of this proxy function must always be incorporated into coordinative programs for children. The most important distinctive characteristic of the epidemiology of childhood is that unlike in the elderly, serious chronic illness is relatively rare. This requires that specialized services for children with such disorders are heavily dependent on regional referral centers, programs that maintain the expertise, volume of patients, and resource commitment to address these serious but relatively rare disorders. The developmental nature of childhood implies that the problems and service needs of children will be highly dynamic over time and involve developmental support services, such as early intervention programs, as well as school-based interactions. Because children are the poorest segment of our population, poverty and means-tested public programs, such as Medicaid, are of particular concern in developing and evaluating care coordination efforts for children.

What has generally been lacking is an assessment of the evidence regarding the actual impact of care coordination efforts on outcomes for children with special health care needs. In response, this technical review is directed at the evaluative literature, those published reports that attempt to assess the experience of children with special health care needs and their families in response to purposeful care coordination efforts.

In general, these efforts for improving the coordination of care for children with special health care needs have taken two forms:

  • Specialized care coordination interventions for selected clinical populations. These include the use of case managers, the establishment of a medical home, or home care strategies.
  • The structural organization of health care services. The dominant current approach is managed care.

Specialized care coordination interventions have been the primary focus of the clinical literature. Here, efforts have been directed at shaping clinical practice procedures and adding coordinative services in direct care delivery programs. Despite the many prescriptive articles concerned with care coordination for children with special health care needs, there has not been a recent review of the evaluative evidence base for assessing such approaches in actual populations of children.

Care coordination is also a focal point for concerns regarding the utility of larger organizational structures of health care delivery, which in the context of children with special health care needs, has almost exclusively been on the impact of managed care. Of special concern for current policy deliberations has been the impact of managed care on children with special health care needs enrolled in public insurance programs, particularly Medicaid. Although the general issue of managed care for children with special health care requires continued attention, the sheer numbers of children affected by Medicaid managed care initiatives, the special vulnerability of poor children to uncoordinated care, and the growing importance of chronic disease to social disparities in child health outcomes, have only underscored the urgency of this issue in the policy arena. This technical review, therefore, attempts to inform discussions of this issue by focusing on the impact of structural influences on care coordination for poor children enrolled in Medicaid managed care (M-MC).

Accordingly, the strategy utilized by this technical review is directed at the evaluative evidence base for both the specialized interventions and structural organization arenas of care coordination. Specifically, the technical review addresses the following objectives:


To identify and critically examine studies that empirically evaluate models of care coordination interventions for children with special health care needs.


To identify and critically examine studies that empirically evaluate the impact of managed care on children with special health care needs, particularly those enrolled in Medicaid.


To develop recommendations for future research and the evidence related to potential ameliorative action.

The emphasis of this technical review, therefore, is on direct, empirical evaluation. Non-evaluative papers documenting associations between elements of practice and indicators of care coordination were examined for possible relevant references; however, these were not included for detailed review. Similarly, articles outlining prescriptions for improving care coordination but without presenting new, evaluative data were reviewed for references only and not included in this review. Finally, the literature searches for the technical review were focused and less extensive than those conducted for a full systematic review, in line with the more limited objectives and designated resources of a technical review.

Technical Review Structure

This technical review is organized into the following chapters:

  • Chapter 1 . Introduction. This chapter presents the goals, objectives, background and general analytic approach of the technical review.
  • Chapter 2 . Review of Analytic Approaches and Definitions. This chapter critically reviews conceptual framings and definitions used by prior reviews and prescriptive papers concerned with care coordination and CSHCN.
  • Chapter 3 . Assessment of Evidence for Best Practices of Care Coordination for CSHCN. This chapter examines critically peer-reviewed evaluations of interventions designed to improve care coordination for CSHCN.
  • Chapter 4 . Evidence for the Impact of Managed Care for CSHCN Enrolled in Medicaid. This chapter presents a systematic review of the literature documenting the impact of placing CSHCN enrolled in Medicaid into managed care systems. The specific focus on this issue reflects two considerations: 1) the importance of this strategy in shaping the potential opportunities and obstacles for care coordination for the most vulnerable CSHCN and 2) the need to assess the available evidence base for guiding programmatic and policy deliberation of Medicaid-managed care strategies and their specific components.
  • Chapter 5 . Summary and Recommendations


National survey data suggest that more than 30 percent of all children are reported to have some form of chronic health condition.5 However, there is considerable variation in the nature and severity of chronic illnesses in children. The most common serious chronic condition is asthma with some 12 percent of children having received a diagnosis of asthma at some time in their lives. Approximately 6 percent of children are reported to have a diagnosis of attention-deficit/hyperactivity disorder. Although overweight is not usually considered a chronic health condition, almost 17 percent of all children aged six through 19 have a body mass index above the 95th percentile.6 Reliable national figures for depressive disorders in children are not currently available; however one large study suggested prevalence among nine to 16 year olds of approximately three percent.7

These current prevalence figures represent a substantial increase in childhood chronic illness over the past several decades.5, 8 For example, while approximately two percent of children were reported to have a chronic health condition that limited their activities in 1960, by 2003 the comparable figure reached eight percent. Although the increase in childhood chronic illness is likely due in part to changes in survey methodologies, improvements in diagnosis, and expanded public awareness of behavioral and developmental disorders, there is strong evidence that the prevalence of certain important chronic child health conditions has increased.9 There are also data that suggest that chronic illness is contributing more profoundly to social disparities in child health.5

Although the nature and impact of chronic illness in childhood is heterogeneous, there are important considerations that are common to virtually all such conditions regardless of their specific diagnosis.1, 2 The care required by children with serious chronic illnesses is almost always associated with enhanced financial costs. Children with serious chronic disorders usually require intense clinical management both in community and hospital settings. Close surveillance of disease progression, symptoms and functioning, and adverse medication effects, will often necessitate frequent communication and office visits. Managing hospital admissions and discharge planning may also prove complex and involve a variety of clinicians and community resources. In addition, an uncoordinated approach to the multitude of required clinical visits can prove highly burdensome and can undermine even the most committed family's attempts to adhere to clinical recommendations. Although most children with chronic illness will experience the same level of psychological and behavioral issues as other children their age, the presence of a chronic illness does elevate the likelihood that they will experience such a disorder. The presence of a chronic illness can also add extra burdens to families which can be expressed in a variety of psychological, social, and financial manners.1, 2


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