Technical Review 

Number 14 

A Critical Analysis of Care Coordination Strategies for 

Children With Special Health Care Needs 

Prepared for: 

Agency for Healthcare Research and Quality 

U.S. Department of Health and Human Services 

540 Gaither Road 

Rockville, MD 20850 

www.ahrq.gov 

Contract No. 290-02-0017 

Prepared by: 

Stanford University–UCSF Evidence-based Practice Center, Stanford, CA 

Investigators 

Paul H. Wise, M.D., M.P.H. 

Lynne C. Huffman, M.D. 

Gabriel Brat, B.A. 

AHRQ Publication No. 07-0054 

June 2007
ii

This document is in the public domain and may be used and reprinted without permission except 

those copyrighted materials noted for which further reproduction is prohibited without the 

specific permission of copyright holders. 

Suggested Citation: 

Wise PH, Huffman LC, Brat G. A Critical Analysis of Care Coordination Strategies for Children 

With Special Health Care Needs. Technical Review No. 14. (Prepared by the Stanford 

University—UCSF Evidence-based Practice Center under Contract No. 290-02-0017.) AHRQ 

Publication No. 07-0054. Rockville, MD: Agency for Healthcare Research and Quality. 

June 2007.

The investigators do no have any affiliations or financial involves that conflict with the 

material presented in this report. 
iii

Preface 

The Agency for Healthcare Research and Quality (AHRQ), through its Evidence-based 

Practice Centers (EPCs), sponsors the development of evidence reports and technology 

assessments to assist public- and private-sector organizations in their efforts to improve the 

quality of health care in the United States. The reports and assessments provide organizations 

with comprehensive, science-based information on common, costly medical conditions and new 

health care technologies. The EPCs systematically review the relevant scientific literature on 

topics assigned to them by AHRQ and conduct additional analyses when appropriate prior to 

developing their reports and assessments. 

 To bring the broadest range of experts into the development of evidence reports and health 

technology assessments, AHRQ encourages the EPCs to form partnerships and enter into 

collaborations with other medical and research organizations. The EPCs work with these partner 

organizations to ensure that the evidence reports and technology assessments they produce will 

become building blocks for health care quality improvement projects throughout the Nation. The 

reports undergo peer review prior to their release. 

 AHRQ expects that the EPC evidence reports and technology assessments will inform 

individual health plans, providers, and purchasers as well as the health care system as a whole by 

providing important information to help improve health care quality. 

 We welcome comments on this report. They may be sent by mail to the Task Order Officer 

named below at: Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 

20850, or by e-mail to epc@ahrq.gov. 

Carolyn M. Clancy, M.D. 

Director 

Agency for Healthcare Research and Quality 

Jean Slutsky, P.A., M.S.P.H. 

Director, Center for Outcomes and Evidence 

Agency for Healthcare Research and Quality 

Beth A. Collins Sharp, Ph.D., R.N. 

Director, EPC Program 

Agency for Healthcare Research and Quality 

Marian D. James, Ph.D., M.A. 

EPC Program Task Order Officer 

Agency for Healthcare Research and Quality 
iv

Structured Abstract 

Objectives: The goal of this technical review is to critically examine the issue of care 

coordination for children with special health care needs (CSHCN). Of particular interest is the 

knowledge base relating to those aspects of care coordination for CSHCN that are of greatest 

importance to current practice and policy challenges. 

Review Methods: A structured search and review of the literature was conducted to address the 

following issues: (1) analytic approaches and definitions used for care coordination strategies for 

CSHCN; (2) evidence for best practices of care coordination for CSHCN; and (3) evidence for 

the impact of managed care for CSHCN enrolled in Medicaid. 

Results: Among the principal findings are: (1) despite considerable progress in defining care 

coordination and CSHCN, there remains considerable variation in current analytic approaches 

and definitions; (2) some progress has been made in developing care coordination strategies for 

CSHCN; (3) there is a major need to evaluate the impact of these strategies on health outcomes 

and costs; (4) continued progress in care coordination for CSHCN may depend upon the 

replication and evaluation of promising strategies in different practice settings and under 

different reimbursement policies; (5) the constructive assessment of enhanced care coordination 

programs in managed care systems would be facilitated by new, more focused metrics and 

performance measures; (6) there is little evidence regarding the impact of managed care systems 

on CSHCN enrolled in Medicaid. 

Recommendations: Among the principal recommendations are: (1) increase support for efforts 

to identify in a standard manner CSHCN in large administrative or clinical datasets; (2) expand 

efforts to evaluate care coordination interventions for CSHCN, particularly in managed care 

settings; (3) develop capacity and performance standards of direct relevance for CSHCN for 

managed care plans; (4) link development of care coordination programs for CSHCN to 

emerging practice and health system reforms. 
v

Contents 

Technical Review .......................................................................................................................... 1 

Chapter 1. Introduction ................................................................................................................... 3 

Goals and Objectives................................................................................................................... 3 

Technical Review Structure......................................................................................................... 5 

Background.................................................................................................................................. 5 

Chapter 2. Review of Analytic Approaches and Definitions.......................................................... 7 

Defining Children with Special Health Care Needs.................................................................... 7 

Defining Care Coordination for Children with Special Health Care Needs................................ 8 

Chapter 3. Assessing the Impact of Care Coordination for CSHCN............................................ 13 

Search Criteria ........................................................................................................................... 13 

Review Findings........................................................................................................................ 14 

Chapter 4. Systematic Review of the Impact of Managed Care on Children With Special 

 Health Care Needs: A Special Focus on Medicaid.................................................................... 19 

Background................................................................................................................................ 19 

Review Methods........................................................................................................................ 20 

Results ....................................................................................................................................... 21 

Characteristics and Quality of Individual Studies.................................................................. 21 

Evidence of Program Effects.................................................................................................. 26

Summary of Review Findings ................................................................................................... 28

Chapter 5. Summary and Recommendations................................................................................ 29 

Analytic Approach and Definitions........................................................................................... 29 

Assessing the Impact of Care Coordination Interventions for CSHCN .................................... 30 

Managed Care for CSHCN Enrolled in Medicaid..................................................................... 32 

References..................................................................................................................................... 33 

Appendix A: Summary of Quality Assessment Criteria............................................................. A-1 

Tables 

Table 1. Characteristics of evaluations of care coordination interventions for children with 

 special health care needs............................................................................................................ 15 

Table 2. Summary of Quality Elements of Reviewed Studies...................................................... 18 

Table 3. Summary of Characteristics of Reviewed Studies.......................................................... 22 

Table 4. Summary of Quality Elements of Reviewed Studies...................................................... 25 
vi
Technical Review 
2
3

Chapter 1. Introduction 

 

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: 
4

• 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: 

1. To identify and critically examine studies that empirically evaluate models of care 

coordination interventions for children with special health care needs. 

2. 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. 

3. 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. Nonevaluative 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. 
5

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 

Background 

 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 attentiondeficit/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 
6

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 
7

Chapter 2. Review of Analytic Approaches and 

Definitions 

Defining Children with Special Health Care Needs 

 The designation of children with special health care needs has long been characterized by a 

lack of standard definition. The definition recommended by the Federal Maternal and Child 

Health Bureau (MCHB) and accepted by the Academy of Pediatrics as well as a variety of 

advocacy groups is as follows: 

Children with special health care needs are those who have or are at increased 

risk for a chronic physical, developmental, behavioral, or emotional condition 

and who also require health and related services of a type or amount beyond that 

required by children generally.

10 

 The development of this definition was the result of a longstanding frustration with the 

difficulties inherent in interpreting studies using different definitions as well as the practical 

concern that many CSHCN were not being identified.11, 12 

 Although the MCHB definition is widely recognized as an important step forward in 

providing the field with a standard definition, the actual implementation of this definition in 

large health programs remains highly variable. All state programs rely on some definition of 

children with serious, chronic conditions. These are used for eligibility criteria in a variety of 

medical, early intervention, and educational programs. Most of these draw at least some of their 

funding from Federal sources which in turn have definitional guidelines regarding disabling or 

chronic conditions in children. In addition, a growing number of Federal health and educational 

surveys are attempting to capture the prevalence and severity of chronic health problems in 

children. All of these considerations have underscored the utility of clarifying definitional 

issues, if not agreeing on a universal definition. In part, this variation is due to the difficulties 

inherent in translating this definition into variable sets that are generally available in extant 

administrative or other databases.13 State-administered programs such as Medicaid, for example, 

may rely on information sources that do not possess the requisite data to assess an “increased risk 

for chronic physical, developmental, behavioral, or emotional condition” or enhanced 

requirements for services.14 Even when such data might be available in collected data sets, the 

bureaucratic mechanisms to utilize these data to make judgments regarding each individual child 

may not be in place. Therefore, proxy variables or variable clusters are often employed by a 

variety of child health programs to define CSHCN. Among the most prominent definition 

strategies include: 

• Categorical definitions based upon diagnoses or clinical conditions perceived to convey a 

significant risk for morbidity or mortality. 

• Service definitions based upon elevated patterns of service utilization. 

• Functional status definitions based upon the inability of the child to perform expected, 

age-appropriate functions or activities. 
8

• Programmatic definitions based upon enrollment in specific programs. 

• Cost definitions based upon elevated health care and other service costs. 

 The utility of each of these strategies depends upon the specific objectives for which they are 

designed to address. In general, identification systems that depend upon administrative data will 

tend to employ programmatic or categorical approaches.15-18 Efforts to identify CSHCN based 

upon parental survey data will tend to emphasize functional definitions.19-21 However, the 

inclusion of survey derived functional status information in administrative data sets may be 

feasible in some settings.22 Moreover, these approaches often blur distinctions between 

definitions of CSHCN and those for disability, which pertain directly to reduced function or 

impairment.23, 24 

 Also of concern is that the MCHB definition captures a highly heterogeneous group of 

children with a variety of conditions and severity. While this is an inherent strength of the 

definition in linking the functional needs of a large group of children, it also can obscure the 

special character of embedded subgroups of children. It can also undermine the MCHB 

definition’s utility as a means of identifying selected groups, including the neediest, of children. 

Many programs, therefore, have used more restricted definitions because of programmatic or 

policy-based eligibility regulations. 

 There are no recent assessments of how states or other large health care programs are 

identifying CSHCN. However, based on cursory review of available state Medicaid program 

information, there remain a variety of definitions being utilized, including lists of diagnoses 

considered severe and chronic and participation in programs such as the Supplemental Security 

Income (SSI). 

Defining Care Coordination for Children with Special Health 

Care Needs 

 There remains no standard definition of care coordination which in many ways, reflects a 

lack of a widely accepted theoretical base for care coordination.25 This lack of a standard 

definition has been largely due to the different purposes for which care coordination efforts have 

been designed. Even within the relatively limited arena of child health care there has been no 

consensus on what specifically care coordination actually means. Moreover, there was a 

tendency to approach care coordination not by proposing a general definition but rather by listing 

its most important objectives or requirements. 

 A useful foundation for considering the definition of care coordination for children is 

provided by the Academy of Pediatrics (AAP) in the1999 statement by its Committee on 

Children with Disabilities, “Care Coordination: Integrating Health and Related Systems of Care 

for Children with Special Health Care Needs,” suggested that 

Care coordination occurs when a specified care plan is implemented by a variety 

of service providers and programs in an organized fashion.26

 The statement references only two empirical studies in support of care coordination; one was 

published some 16 years earlier27 and the other was confined to a relatively small sample of 

severely affected children.28 The statement goes on to present the goals of care coordination as 

being to: 
9

• Gain access to and integrate services and resources 

• Link service systems with the family 

• Avoid duplication and unnecessary cost 

• Advocate for improved individual outcomes 

 The procedures to accomplish these goals are less clearly stated, however. In part, this 

reflects the position of the Committee that the respective responsibilities and mechanisms of 

coordination are dynamic and may need to be tailored for different families or geographic 

settings. Nevertheless, the statement suggests that care coordination must address four domains: 

the health care system; the educational system; the social service and public health systems; and 

the home setting. Significantly, the statement suggests that the leader of care coordination for 

the child be a family member, with pediatricians and other professionals assisting as needed. 

Professionals would assume primary responsibility for care coordination only when family 

members could not perform this function. The statement underscores that even in this 

circumstance it is essential to involve the child and family members in all care coordination 

planning and implementation. 

 Subsequent to the 1999 AAP statement, most definitions of care coordination for children are 

in some way linked to a particular model of care provision, the “medical home”. Although the 

concept of the medical home is not inherently confined to child health, it has, nevertheless, been 

embraced far more fully in the pediatric arena as the basis for care coordination. The importance 

of the medical home as an organizing framework for pediatric care coordination is reflected in its 

adoption in Healthy People 2010 which calls for “an increase in the proportion of children with 

special health care needs who have access to a medical home.”29 Indeed, most recent discussions 

of care coordination in the pediatric literature have been framed by the requirements of the 

medical home. Therefore, given the intent of this section to review the definition and elements of 

care coordination specifically for children with special health care needs, it is necessary to 

examine the coordinative elements of the medical home framework. 

 The concept of the medical home is not new. It has its roots in the services provided by the 

settlement houses in Chicago and New York at the turn of the century and was broadly outlined 

in the American Academy of Pediatrics’ Standards of Child Health Care published in 1976.30

However, in 1992 an ad hoc task force of the AAP attempted to provide a more detailed 

definition of the medical home.31 Although no unifying definition was presented, the essential 

elements of the medical home were outlined and included: 

• Provision of preventive care 

• Assurance of ambulatory and inpatient care at all times 

• Assurance of continuity of care 

• Appropriate referral and transfer of necessary information to consultants and families 

• Interaction with school and community agencies 

• Maintenance of a central record and data base 

 Interestingly, care coordination was not listed among the requisite elements, although 

continuity of care is considered by some to relate to care coordination.25 Rather, the statement 

was more concerned with providing a clear standard of comprehensive responsibility for 

physicians providing care for children. The statement, therefore, defined the medical home as 
10

falling under the leadership of physicians, suggesting even that directing physicians should be 

“well-trained in primary pediatric medicine, preferably pediatricians.” 

 In 2002, this general approach to the medical home was reaffirmed by the AAP in a policy 

statement32 developed as part of a strengthened medical home initiative.33 However, this 

statement provided a far more detailed description of the essential components of the medical 

home than that published in 1992. As in the earlier statement, the medical home was directly 

embedded in physician-led, primary care practices, although there was no longer an expressed 

preference for pediatricians specifically. However, unlike the earlier statement, this report 

explicitly argued that care coordination is an essential component of the medical home. 

Specifically, it listed this coordinative component of the medical home as consisting in turn of 

the following eight elements: 

1. A plan of care is developed by the physician, child or youth, and family and is shared 

with other providers, agencies, and organizations involved with the care of the patient. 

2. Care among multiple providers is coordinated through the medical home. 

3. A central record or database containing all pertinent medical information, including 

hospitalizations and specialty care, is maintained at the practice. 

4. The medical home physician shares information among the child or youth, family and 

consultant and provides specific reason for referral to appropriate pediatric medical 

subspecialists, surgical specialists, and mental health/developmental professionals. 

5. Families are linked to family support groups, parent to parent groups, and other family 

resources. 

6. When a child or youth is referred for a consultation or additional care, the medical home 

physician assists the child, youth, and family in communicating clinical issues. 

7. The medical home physician evaluates and interprets the consultant’s recommendations 

for the child or youth and family and, in consultation with them and subspecialists, 

implements recommendations that are indicated and appropriate. 

8. The plan of care is coordinated with educational and other community organizations to 

ensure that special health needs of the individual child are addressed. 

 However, while these care coordination elements were clearly applicable to all children, 

including those with special health care needs, it is important to recognize that the medical home 

framework as outlined above was not specifically directed at children with complex health 

problems. Indeed, while the AAP’s 1999 description of care coordination for CSHCN and its 

2002 statement on the medical home clearly shared general goals and values, a comparison of 

these two approaches to care coordination does suggest important differences in emphasis if not 

content. 

 As noted above, the care coordination document32 while strongly recommending 

collaboration between families and professionals, does clearly suggest that the family and not the 

physician serve as the primary locus of care coordination in most instances. The role of the 

physician is largely facilitative. The medical home definition, on the other hand, identifies a 

primary care physician as the individual principally responsible for care coordination. As a 

consequence of this distinction between the two approaches, a focus on CSHCN tends to 

emphasize coordination of specialty care, home care services, special educational programs, and 

social services, while the medical home tends to emphasize the role of primary care. 

 
11

 These tensions in the respective strategies for care coordination have been generally 

addressed by a gradual formulation of a middle ground: care coordination for CSHCN has 

increasingly embraced the medical home as an important potential strategy and the medical 

home has in many ways become more open to a greater leadership role for the family and 

alternative health care professionals. This middle ground was constructively articulated in a 

cogent review by Cooley and McAllister which presented a care coordination model that was 

attentive to the requirements of both the medical home and care coordination principles for 

CSHCN.34 Using the experience of actual pediatric practices, they suggest that ongoing family 

inclusion in the development and implementation of the medical home for CSHCN is essential as 

is the role of a designated practice-based care coordinator. This same integrated approach is 

represented by a 2005 AAP policy statement, entitled “Care coordination in the medical home: 

Integrating health and related systems of care for children with special health care needs”.35 

Once again, care coordination is not explicitly defined here but rather 

...occurs when care plans are implemented by a variety of service providers and 

programs in an organized fashion. Care coordination is multifaceted. It involves 

needs identification, assessment, prioritizing and monitoring. 

 As in the Cooley and McAllister paper, this most recent AAP statement embeds the medical 

home as a component of care coordination but does not assign to it a specific set of coordinative 

responsibilities. Rather, it suggests that 

...its role is not fixed or determined by a defined set of tasks. Instead, it is a 

dynamic process driven by the health status and developmental progress of the 

child, the specific needs of the child and family, the primary care physician’s 

expertise with children with special health care needs, and the ability of the family 

and/or other professionals to participate in care coordination. 

 This lack of a defined role for clinicians and medical practices respects the heterogeneity of 

patient and family needs, local resources, and clinical capacities. This in turn implies that the 

appropriate coordinative role of clinicians and practices in care coordination for CSHCN must 

rely on intensive and ongoing interaction between patients and their families, primary care 

clinicians, and virtually all service providers involved in the child’s care. The lack of a defined 

role implies continuous or at least regular assessment and reassessment of the quality of care 

coordination in order to know whether alterations in roles or contributions to the care plan are 

required. Although accountability for assuring that these assessments occur and are responded to 

remains vague, it is generally implied in the various approaches that clinicians and clinical 

practices have some basic responsibility for these requirements. 

 In response, a series of instruments and suggested procedures have been developed for 

primary care practices to assess the adequacy of care coordination. The Medical Home Index 

provides standard items for assessing the quality of the medical home, including care 

coordination components, including continuity of care, appropriate use of subspecialty 

consultation, interaction with school and community agencies, and a central, accessible medical 

record.36 In addition, practice-based tool kits for the development and evaluation of medical 

home care characteristics for CSHCN have been developed and are being used in a variety of 

states.22, 37 
12
13

Chapter 3. Assessing the Impact of Care Coordination 

for CSHCN

Search Criteria 

 A search of the literature was conducted using the following databases and search terms. 

The PubMed database, the Social Sciences & Humanities Index, and the Social Services 

Abstracts databases were searched (1988 – February 2006; includes HealthSTAR since 2000). 

For these databases, a broad search was conducted using MeSH headings and terms: 

• “Disabled children” or “Chronic illness[Multi]” or “Chronic disease” or “Catastrophic 

illness” or “Special health care needs” or “Special needs” or “Activity limitations.” 

• In conjunction with: “infant” or “child” or “child, preschool” or “adolescent.” 

• In conjunction with “Care coordination” or “Case management” or “Medical home” or 

“Family” or “Parents.” 

 These search criteria were designed to reflect the scope of this technical review and to 

capture articles that were likely to most directly relate to the definitions of CSHCN and care 

coordination used in this review. (For an assessment of a more comprehensive definition of care 

coordination, see the review by McDonald and colleagues.25) Of the generated references, those 

considered for detailed review also had to be empirical evaluations of care coordination 

programs that involved more than one diagnostic group. These criteria were chosen because of 

the expressed focus on empirical evaluation. All evaluation studies regardless of study outcomes 

(including utilization, costs and health outcomes) were included in the detailed review. Articles 

concerned with interventions directed at only one diagnostic group (e.g. asthma) were not 

included in the review. The concern here was that such experiences may be too narrow and not 

reflect appropriately the needs of a diverse population of children with special health care needs, 

the central focus of this review. For example, asthma is of far higher prevalence, often of lower 

severity, and generally requires fewer services than many of the other conditions of concern in 

assessing care coordination for children with special health care needs. In addition, a 

forthcoming systematic review addresses comprehensively quality improvement strategies for 

asthma care, including those that improve care coordination. In contrast, there has not been a 

recent review of generic care coordination programs designed to address the needs of children 

with a variety of clinical disorders. The articles generated by the search criteria above were 

examined to identify those that were specifically evaluative in nature. These studies and their 

relevant references were reviewed by one of the authors (PHW). 

 Recently, West and colleagues described a suggested approach to rating the quality and 

strength of empirical studies.38 The authors presented a selected set of scales and checklists that 

clinicians, policymakers, and researchers can use to assess study quality and the strength of 

scientific evidence. We used these assessment methods to review the identified studies.39 (See 

Appendix A for review criteria). 
14

Review Findings

 Despite considerable efforts to describe and prescribe care coordination initiatives for 

CSHCN, there is a striking paucity of empirical evidence regarding its ultimate impact. For 

example, the 1999 AAP statement on care coordination cited only 2 evaluative studies in support 

of its recommended strategies; only one had been published in the prior 15 years. The 2005 

AAP policy statement cited only three studies that included children with special health care 

needs. 

 Our review identified seven studies published in the past 15 years that evaluated the impact 

of care coordination interventions on health care utilization, costs, or health outcomes.28, 38-42 

The nature of the coordination programs, the study designs, the health status and social status of 

the children served, and the outcomes measured varied considerably. A summary of these 

programmatic and evaluative elements are presented in Table 1. A summary of the study quality 

characteristics of the reviewed studies are presented in Table 2. 

 Criscione and colleagues using a randomized control trial evaluated a coordinated care model 

on hospital admissions for a population of people (primarily adolescents and adults) with 

developmental disabilities.40 Individuals in the coordinated care group had shorter average 

lengths of stay and lower hospital charges than did the group receiving standard care, especially 

when charges were adjusted for case mix. The authors calculated substantial savings associated 

with this reduced use of hospitalization services. 

 A study by Fields et al. described the experience of a coordination model for 28 technologydependent children living at home.28 The coordination of care was intensive and was led by care 

coordinators from a community-based home care agency. Although a longitudinal case-series 

design, the number of children studied was inadequate to ascertain the impact of care 

coordination on utilization, costs, or health outcomes. However, parents did report a high level 

of satisfaction with care coordination to the extent that it allowed their children to be cared for at 

home, an important consideration in the care of these seriously disabled children. 

 Liptak et al. reported a descriptive study of a hospital-based care coordination program in 

Rochester, New York.41 The authors compared hospitalization patterns among children with 

chronic illness admitted to the major tertiary pediatric hospital in Rochester with those of a group 

of other tertiary pediatric hospitals in other areas of the country and with national data. The 

study reported that hospital length-of-stay and associated costs were lower in Rochester than in 

the comparison groups. Approximately, half of the costs of the coordination program could not 

be recovered from standard charges to insurance plans. Rather, supplemental funds were 

obtained from a capitation agreement with local insurers to support the care coordination 

program. The authors calculate that the savings from reduced hospital charges far exceeded the 

costs associated with the coordination program. The authors do not account for the fact that 

hospitalization rates for children in Rochester appear to be significantly lower in general than 

other studied cities.42

 Perhaps, the most instructive study regarding the impact of care coordination for CSHCN 

was performed by Palfrey and colleagues, reporting on the results of the Pediatric Alliance for 

Coordinated Care (PACC) model.43 Using a pre/post survey of parents, the authors assessed 
15

Table 1. Characteristics of evaluations of care coordination interventions for children with special health care 

needs 

Article Study design N Sample 

Definition or 

Eligibility 

Coordination Program 

Components 

Measured Outcomes 

Categories 

Fields et 

al.28 

Prospective 

cohort 

28 Technologydependent 

children 

Home-based care via 

consortium of community 

services and medical 

facilities; set minimal 

standards for discharge 

planning. 

Parent satisfaction, 

technology 

dependence, death, 

care use, cost 

Criscione 

et al.40 

Randomized 

Control Trial 

115 Adolescents 

and young 

adults with 

development

al disabilities 

Nurse practitioner clinical 

care; referral and 

accompanying to 

specialty services; active 

involvement in 

hospitalization and 

discharge planning. 

Hospital admissions, 

length of stay, charges 

Liptak et 

al.41 

Retrospective 

descriptive 

10,715 Children with 

ICD-defined 

chronic 

illness 

Case management and 

wraparound services in 

specialty care clinics. 

Hospital admissions, 

length of stay, charges

Palfrey et 

al.43 

Prospective 

cohort 

150 Children with 

clinically 

assessed 

serious 

chronic 

diseases 

Nurse practitioners in 

pediatric care; 

assignment of local 

parents of CSHCN; 

modification of pediatric 

office routine; 

individualized health 

plan; expedited referrals 

and communication with 

specialists. 

Parent satisfaction, 

parent work days 

missed, care use, 

costs 

Farmer 

et al.44 

Pre-post 

treatment 

51 Children with 

clinically 

assessed 

serious 

chronic 

diseases

Nurse practitioners in 

pediatric care; 

assignment of local 

parents of CSHCN; 

modification of pediatric 

office routine; 

individualized health 

plan; expedited referrals 

and communication with 

specialists; home visit. 

Parental satisfaction, 

family needs, caregiver 

strain, parents’ missed 

work days, children’s

school absences, and 

utilization

Chernoff 

RG et 

al.45

Randomized, 

prospective 

clinical trial 

136 Children with 

diabetes, 

sickle cell 

anemia, 

cystic 

fibrosis, 

asthma 

Assignment of local 

parents of CSHCN; child 

life specialists; telephone, 

visits, family-based 

events. 

Adjustment and mental 

health problems 

Pless IB 

et al.46

Randomized, 

prospective 

clinical trial 

332 Care 

received in 

specialty 

clinics 

Nurses assigned as case 

managers and family 

support facilitators; 

referral coordination; 

school communication. 

Psychosocial 

functioning 
16

an intervention model which relied on nurse coordinators based in a consortium of primary care 

practices in the Boston area. The intervention model was a medical home strategy that relied on 

six components: 

1. The services of a designated pediatric nurse practitioner. 

2. Consultation from a local parent of a child with special health care needs. 

3. Modification of office routines. 

4. Implementation of an individualized health plan (IHP). 

5. Regularly scheduled continuing medical and nursing education. 

6. Expedited referrals and communication with specialists and hospital-based personnel. 

 A total of 150 children with a variety of major health problems were recruited in six pediatric 

practices. Although this group was derived from a total of 222 referred families, it was unclear 

what portion of the 72 families not enrolled in the study resulted from exclusion criteria or 

refusal to participate, an important distinction in assessing the potential for selection bias. 

Families were administered surveys prior to the intervention and two years after the intervention 

was initiated. Thirty-three of the original 150 families were not available for the follow-up 

survey, leaving 117 for analysis. The study found that parent satisfaction with pediatric primary 

care improved subsequent to the medical home intervention. Specifically, there was 

improvement in being able to speak with the same nurse by phone, ease in obtaining letters of 

medical necessity, receiving resources, obtaining acute medical care as well as specialty referral, 

receiving prescriptions, understanding the child’s condition and setting goals for care, and 

improving the relationship with the child’s physician. These improvements were noted to be 

greatest for children with the most severe conditions. However, overall satisfaction with their 

primary care source did not change as satisfaction levels were high prior to the intervention. 

Emergency room visits and school days missed did not change significantly over the study 

period. Parents reported a reduction in days they missed work and in their child’s need for 

hospitalization. However, given the study pre/post design, the authors could not assess the 

extent to which these findings were due to the child growing older rather than program effects. 

The authors estimated that the care coordination program cost approximately $400 annually for 

each child enrolled. This figure did not include any estimate of savings or additional 

expenditures due to possible changes in utilization resulting from care coordination activities. 

Although the studied children were generally quite severely affected by their conditions, this 

study represents the first community practice-based trial of a medical home model for children 

with special health care needs. 

 Farmer and colleagues utilized the PACC medical home model developed by Palfrey et al. to 

improve care coordination among CSHCN in three university-affiliated primary care practices in 

the rural Midwest.44 A total of 51 children were studied via a pre/post parental survey; this 

represented approximately one-third of the children eligible for the study as the remaining twothirds declined participation or could not be reached for the follow-up survey. Post intervention, 

parents reported reduced caregiver strain, parents’ missed work days, their children’s school 

absences, and ambulatory care visits. Hospitalizations did not decrease. Parental satisfaction 

with care coordination and access to mental health services improved but satisfaction with 

overall primary care fell slightly subsequent to the intervention. No cost data were provided. 

Two studies evaluated the impact of coordinative interventions on the mental health outcomes 

for CSHCN. A study by Chernoff et al.45 utilized organized linkages to “experienced mothers” 
17

and child life specialists to provide support and logistical expertise to families engaged in the 

program. Although not specifically directed at care coordination, the nature of the intervention 

included guidance and support for coordinating care elements. In direct response to calls for 

more rigorous evaluation of coordinative and mental health interventions for CSHCN, this study 

used a randomized, controlled trial design to assess the impact of a 15 month program. The 

measured outcomes were focused on four areas: adjustment and role skills; depression; anxiety, 

and self-perception. Overall, the intervention had modest results. In part, this may have been due 

to the relatively small number of children who entered the trial with highly abnormal scores on 

the administered tests. The intervention seemed to have its greatest positive effects in children 

initially found to be at highest risk for the examined psychosocial outcomes. 

 A similar study was conducted by Pless et al.46 which evaluated the impact of a nursing 

intervention program to improve the adjustment of children with chronic disorders. Children 

recruited from a variety of specialty clinics were randomized to a program utilizing nurses to 

address parental stress, parental competency and overall family functioning. Control families 

received standard nursing care from the specialty clinics. In an effort to restrict substantial 

nursing involvement to the program group, families to be entered into the program group were 

recruited from clinics without standard nursing involvement. However, this strategy yielded too 

few recruitments and was abandoned. The portion of the control and program groups derived 

from clinics with preexisting and ongoing nursing involvement was not provided. Outcomes 

were generally positive although somewhat mixed, particularly among different age groups. 

This complex set of findings may have been due in part to the varied utility of the measures used 

for different developmental ages and underlying disabling conditions. 

 Although not a trial of care coordination per se, a study by Antonelli and Antonelli provided 

important insight into the costs associated with care coordination for CSHCN in primary care 

practice.47 The authors documented in detail all care coordination activities performed in a 

primary care pediatric practice over a 95 day period. Assessed activities included telephone 

discussions, contacts with consultants, form processing for schools, camps, etc, meetings, written 

reports for SSI or other agencies, letters, chart reviews, and patient-focused research. Costs were 

calculated on the basis of time spent on the care coordination elements multiplied by the average 

salary of the office personnel performing the service. Over the study period, 774 encounters on 

444 separate patients were logged. Half of the encounters were considered related to issues not 

traditionally considered medical, such as processing referrals, consulting with schools, and 

oversight for psychosocial problems. Based on national salary data, the annual cost of the care 

coordination activities in this care model for the studied CSHCN ranged between a 25th 

percentile of $22,809 and a 75th percentile of $33,048, which per child averaged $51 and $71, 

respectively. The authors concluded that these costs while considerable were not prohibitive for 

their practice setting. However, the study also underscored the relatively large costs associated 

with care coordination that are not directly reimbursable under current payment mechanisms. 

The cost figures in this study were substantially lower than those estimated by Palfrey et al. for 

the PACC model. However, the children entered into the PACC program were a more severely 

affected group than those in the Antonelli and Antonelli study, which included children with the 

kind of broad range of severities usually found in general pediatric practices.
Table 2. Summary of Quality Elements of Reviewed Studies 

Article Study Question Study Population Comparability of Subjects Exposure to Intervention Outcomes Statistics Results Criscione et al.40 ● ● ● ● ● ● Chernoff RG et al.45 ● ● ● ○ ● ○ Farmer JE et al.44 ● ● ○ ● Fields AI et al.28 ● ○ ● ○ Liptak GS et al.41 ● ○ ● ○ Palfrey J et al.43 ● ● ○ ● ● Pless IB et al.46 ● ● ○ ● ○ ●=addressed domain fully =addressed domain in part ○=did not address domain

18
19

Chapter 4. Systematic Review of the Impact of 

Managed Care on Children With Special Health Care 

Needs: A Special Focus on Medicaid

 Beyond specific intervention programs, efforts to enhance care coordination for CSHCN 

have relied on changes in the overall organization of services, primarily through some form of 

managed care. In a recent review of the literature regarding insurance coverage and CSHCN, 

Jeffrey and Newacheck detailed the published evidence to date regarding the experience of 

CSHCN under different insurance systems.48 This cogent review suggested that the few studies 

assessing the impact of managed care on CSHCN revealed mixed effects on health care 

utilization and satisfaction. Among their most important findings was a troubling lack of 

research regarding the actual health outcomes of chronically ill children in relation to different 

insurance coverage profiles. 

 This review is intended to extend the findings of the Jeffrey and Newacheck review by 

offering a more detailed examination of published reports regarding the impact of managed care 

on a particular group of CSHCN: those enrolled in Medicaid. The focus on this group is based 

on several considerations. First, poor children are more likely to be particularly vulnerable to 

any deleterious effects of structural changes in care delivery.49 Second, they also appear to be in 

greatest need of improvements in the coordination of care.50 Third, over the last two decades, 

legislative and regulatory action by state governments has resulted in US states moving large 

number of children from Medicaid fee for service (M-FFS) into Medicaid managed care (M-MC) 

programs,51 a shift whose effects have taken on a variety of forms.52, 53 Current policy trends 

will likely extend this shift in delivery structure to a growing number of CSHCN.54 Because 

Medicaid provides health insurance for the single largest group of CSHCN in the country, the 

prospective shift from M-FFS to M-MC for these children represents the most critical, potential 

change in the structure of health care delivery for CSHCN currently being deliberated at the state 

and national level. 

Background 

 Despite recurring calls for data,55-58 the effects of the movement from M-FFS to M-MC for 

CSHCN remain unclear.59, 60 The potential utility and uncertainties related to poor children 

served by Medicaid managed care were voiced as early as 199060, 61 and included concerns about 

access, utilization, and health outcomes. Over the subsequent fifteen years, others have revisited 

these concerns, particularly for CSHCN.62-65 When articulated, the justification for the shift of 

CSHCN from M-FFS to M-MC usually includes one of three objectives. A central objective is to 

enhance access to a primary care provider as well as appropriate specialty care, with improved 

service utilization mix.66 A second objective is to improve expressly the coordination of 

services. Such coordination can occur by providing one usual place of care with an emphasis on 

providing preventive services.67 It also can occur by making services more readily available 

with improved record-keeping and without duplication. A third objective is to reduce costs 

through more cost-effective prescription practices,68 preventing hospitalization and emergency 

department use and, reducing direct and indirect overhead costs.69

 
20

In large part, this rationale for moving CSHCN into M-MC is based on experiences with 

adults and generally healthy children. However, CSHCN are more likely than other children to 

be enrolled in Medicaid70 and the implementation of managed care has varied.71, 72 

Review Methods 

 To identify published peer-reviewed research related to the effect of M-MC on CSHCN, we 

conducted a literature search and sought further information from existing bibliographies and 

expert colleagues. For the purposes of this review, we excluded ‘gray literature’ -- materials that 

are found in recorded, written, or electronic form that are not traditionally well indexed, readily 

available, or peer-reviewed (e.g., conference papers, white papers, technical reports, electronic 

theses and dissertations, online documents, and oral presentations/abstracts). 

The PubMed database was searched (1988 – February 2006; includes HealthSTAR since 

2000). For this database, a broad search was conducted using MeSH headings and terms: 

• “Disabled children” or “Chronic illness[Multi]” or “Chronic Disease” or 

“Catastrophic illness” or “special health care needs” or “special needs.” 

• In conjunction with: “infant” or “child” or “child, preschool” or “adolescent.” 

• In conjunction with: “Medicaid” and “Managed Care Programs” or “Medicaid” and 

“HMO.” 

 We also searched the Cochrane Controlled Trials Register database and the Cochrane 

Collaboration’s Specialized Register of Effective Practice and Organization of Care (EPOC). For 

this database, a free text search strategy was applied, using the following terms 

(* indicates wild card symbol): 

• Special health care needs* or disabil* or chronic*. 

• In conjunction with: infant or child or preschool* or adolesc*. 

• In conjunction with: Managed care* and Medicaid* or Medicaid* and HMO*. 

 Finally, the reference lists of located papers were scanned for studies of children with special 

health care needs in Medicaid managed care and relevant articles were retrieved. We compiled 

the results from all searches into an EndNote bibliographic database, removing all duplicate 

records. Through this process, we identified 99 publications. 

 Inclusion and exclusion criteria were determined. Inclusion criteria stated that the article 

must be written in English and must: (1) be empirical; and, (2) address children, special health 

care needs (broadly considered), health care services as provided by Medicaid managed care, as 

well as patient experiences and outcomes (broadly considered). The exclusion criteria stated that 

articles would be excluded if: (1) representing opinions, commentaries, reviews; (2) addressing 

behavioral or mental health issues exclusively; or, (3) focusing on state children’s insurance 

programs (SCHIP) -- within Federal guidelines, each state establishes the design and 

administrative/operating procedures of its SCHIP program; thus, not all SCHIP programs are 

extensions of Medicaid. 

 Two persons (LH and GB) independently examined the titles and abstracts of the 99 

publications. From this set, 59 publications were excluded (the two reviewers agreed that articles 

did not meet inclusion/exclusion criteria). Thus, there were 40 publications that were put forward 
21

for full review. The two reviewers independently reviewed the full text of the 40 articles. Of 

these, an additional 24 were excluded because of one of the following: (1) editorial, comment, or 

letter; (2) not relevant for specific reason (i.e., discussion of design or methodological issues, 

opinion/commentary/description, or review or overview). 

 The remaining 16 articles were the subject of our efforts concerning the quality of studies, 

strength of evidence, and summary of findings. For the quality of studies assessment, the two 

reviewers completed and compared their abstractions; disagreements were settled by discussion 

and additional review of disputed articles. 

Results 

Characteristics and Quality of Individual Studies 

 Sixteen articles addressed the impact of Medicaid Managed Care on health services delivery 

to children with special health care needs (see Table 3). There was one randomized trial.73 The 

remaining 15 articles represented observational studies: one was a prospective cohort design,74

seven were retrospective cohort designs,75-81 one was a time series design,82 four were beforeand-after designs,83-86 one was a cross-sectional design,87 and one was a case series.70 
Table 3. Summary of Characteristics of Reviewed Studies 

Article Study design 

and State 

End of data 

collection 

Sample 

size for 

CSHCN 

Special Health Care Needs: Definition or Eligibility Measur

Chan and Vanderberg76 Retrospective cohort 

MN 

12/01/95 374 Katie Beckett Option: <18 meeting SSI definition 

of disability and not living in hospital or 

intermediate care but needing that level of care 

Health CCare Ex

Finkelstein et al.77 Retrospective cohort 

MA 

09/30/96 1928 Children with diagnosis of asthma Health C

Use of EEquity oMedicat

Fox et al.83 Before-after 

39 states 

12/31/97 0 Not addressed Other (M

services

Gadomsky et al.82 

Time series 

MD 

11/30/93 3160 Children eligible for SSI1 or MA (AFDC-related 

assistance to disabled children) 

Health C

Grossman et al.85 

Before-after 

OH 

06/30/96 38 Children eligible for SSI Health C

SatisfacCare Ex

Lieu et al.74 Prospective 

cohort 

CA, DC, MA 

10/01/00 1633 Children (2 – 16 years old) with diagnosis of 

asthma confirmed by utilization data and parent report 

Health CEffectivSatisfacAsthma 

Mauldon et al.73

Randomized 

trial 

1 state 

12/31/92 2078 Children with major disabling conditions (i.e., 

blindness, diabetes, cerebral palsy, mental retardation, cancer, missing limbs) Children with nondisabling chronic conditions (i.e., eczema, asthma, hay fever, other allergies) 

Health C

1 Supplemental Security Income (SSI): medically determined physical or mental impairment that results in severe functional limitations, can be expected t

>12 months. 

22
Table 3. Summary of Characteristics of Reviewed Studies (continued) 

Article Study design and 

State 

End of data 

collection 

Sample 

size for 

CSHCN 

Special Health Care Needs: Definition or Eligibility Measur

Mele and Flowers70

Case series 

AL, OH, TN 

02/01/96 0 Title V, state criteria2 Satisfac

Millar et al.87 Cross-sectional 

OK 

12/31/99 750 Children eligible for SSI Satisfac

Mitchell and Gaskin81 Retrospective cohort 

DC 

12/30/02 644 Children eligible for SSI Access 

Mitchell et al.78 Retrospective cohort 

OR 

10/31/98 615 Children eligible for SSI 

Children with asthma 

Access UtilizatioCare 

Roberto et al.86

Before-after 

DC 

08/01/03 644 Children eligible for SSI Access 

Shatin et al.75 Retrospective cohort 

2 Midwest states 

12/31/93 3839 Children with specific high-prevalence conditions 

(i.e., asthma, ADHD, diabetes, epilepsy, sickle cell anemia) 

Health C

Valet et al.80 Retrospective 

cohort 

TN 

08/30/02 399 Children with chronic conditions - determined by 

5-item CSHCN Screener, 

Access 

2 Title V Alabama: Any child with a special health care need (see list of eligible conditions) is eligible for services based on individual needs and the availa

agency (http://cshcnleaders.ichp.edu/TitleVDirectory/PDF-Files-May-2003/Alabama_2003.pdf). Title V Ohio: A medically handicapped child is one who suffers from a chronic organic disease, defect, or congenital or acquired physically handicapping amay hinder achievement of normal growth and development (http://cshcnleaders.ichp.edu/TitleVDirectory/PDF-Files-May-2003/Ohio_2002.pdf). 

Title V Tennessee: Eligible child must have a covered condition or be chronically handicapped by any reason of physical infirmity, whether congenital or a

accident or disease which requires medical, surgical, or dental treatment and rehabilitation, and be totally or partially incapacitated for receipt of normal e

(http://cshcnleaders.ichp.edu/TitleVDirectory/PDF-Files-May-2003/Tennessee_2002.pdf). 

23
24

 The study quality criteria suggested by West et al. (see Appendix A) were used in the review. 

Table 4 presents the summary of these ratings. Of the 16 articles, two fully addressed all 

domains.73, 82 Three other articles addressed most of the domains, omitting only information 

about subject comparability,77 exposure to managed care,74 or results.86 The remaining 11 

articles partially or entirely overlooked two domains,75, 79-81 three domains,78, 79, 83-85 or four or 

more domains.70, 76, 87

 All of the articles described a research question that was clearly focused and appropriate, 

depicted the study population, and delineated the outcomes. Most articles (n=14) also included 

information about the exposure of the study population to Medicaid managed care (the 

intervention under examination). Only a few articles (n=5) included a measure of effect size 

(e.g., odds ratio, absolute or relative risk reduction, number needed to treat). Similarly, only six 

fully addressed the issue of subject comparability (e.g., defining special health care needs, noting 

specific inclusion/exclusion criteria, establishing comparability of groups at baseline). 

 Subject comparability is important in these studies as there can be notable between-group 

variation at the start of a new program. In the case of M-MC and children with special health 

care needs, such variation may include child demographics (with significant proportions of 

children in Medicaid who are poor, minority, or in single-parent households), child epidemiology 

(with low overall prevalence of disease made up of mainly rare conditions, though asthma, 

diabetes, epilepsy, and sickle cell anemia are exceptions) and adverse selection (children who are 

less healthy tending to join one plan or another). 
Table 4. Summary of Quality Elements of Reviewed Studies 

Article Domains 

Study 

question 

Study 

population 

Comparability 

of subjects 

Exposure to 

intervention Outcomes Statistics Results 

Chan and Vanderberg76 ● ● ● ● ○ ○ Cooper et al.84 ● ● ● ● ● ● Finkelstein et al.77 ● ● ● ● ● ● Fox et al.83 ● ● ○ ● ● ○ ○ Gadomsky et al.82 ● ● ● ● ● ● ● Grossman et al.85 ● ● ● ● ● ○ Lieu et al.74 ● ● ● ○ ● ● ● Mauldon et al.73 ● ● ● ● ● ● ● Mele and Flowers70 ● ● ○ ● ● ○ ○ Millar et al.87 ● ● ● ○ ● ○ ○ Mitchell and Gaskin81 ● ● ● ● ● ○ Mitchell and Gaskin79 ● ● ● ● ● ○ ○ Mitchell et al.78 ● ● ● ● ● ○ Roberto et al.86 ● ● ● ● ● ● ○ Shatin et al.75 ● ● ● ● ● ○ Valet et al.80 ● ● ● ● ● ○ ●=addressed domain fully =addressed domain in part ○=did not address domain 

25
26

Evidence of Program Effects 

 In this section, we distill the results of the 16 identified studies. We apply the strategy of 

Newacheck and colleagues56 for categorizing these outcomes. Briefly, there are seven outcomes 

categories that are salient for CSHCN. While one involves care coordination directly, the other 

elements also reflect elements of care coordination more generally, including satisfaction, access 

and family impact. Moreover, unlike specific care coordination interventions, M-MC is 

structural and organizational system whose coordinative effects can touch virtually all aspects of 

these care indicators: 

1. Access to Care, with indicators reflecting convenience and physical access, travel and 

waiting time, provider choice, coverage of services, and availability of services 

(frequently denoted in measures of unmet need). 

2. Health Care Utilization, with indicators reflecting use and volume of primary medical 

care, specialized medical care, specialized therapies (e.g., physical therapy, mental 

health therapy, home health services), family support services, equipment and 

supplies, and related services (e.g., early intervention, special education). 

3. Quality of Care, with indicators reflecting case finding and service coordination, 

provider training and supply, medical necessity, clinical quality (e.g., quality of care 

standards, quality improvement system), and grievance procedures. 

4. Satisfaction with Care, with indicators reflecting family and practitioner satisfaction; 

5. Health Care Expenditures, with indicators reflecting expenditures for care (including 

out-of-plan services), indirect costs incurred by families, degree to which other 

funding provides financing (e.g., Title V, EPSDT), and degree to which savings are 

achieved by managed care. 

6. Health Outcomes, with indicators reflecting global health as well as cognitive, 

physical, social, and emotional functional status. 

7. Family Impact, with indicators reflecting sibling and parent health status, parent 

financial burden, parent knowledge of special health care needs, and managed care 

plan-provided family support. 

 The general findings of the reviewed studies were highly varied and did not present a clear 

message as to the general utility of M-MC for CSHCN. Eight studies reported utilization 

findings; five access findings; four quality findings; four satisfaction findings; and one 

expenditure finding. None of the reviewed studies reported direct health outcomes measures or 

family functioning but did report parental survey data on child health. 

 Access to Care. There was no consistent set of findings regarding access to care. Fox et al.83 

reported that after the introduction of M-MC, care programs experienced reduced financing for 

most early intervention services for CSHCN but enhanced financial support for vision and 

enabling services. Mitchell and Gaskin79, 81 similarly reported mixed access findings. CSHCN 

in M-MC had similar rates as their M-FFS counterparts of unmet needs for physician/hospital 

care, mental health, home health and therapy services. However, the children in M-MC had 

fewer unmet needs for dental care, medical equipment and prescription drugs. Roberto et al.86

reported children in M-MC had fewer problems accessing primary, specialty, emergency and 

hospital care. However, Valet et al.80 found that parents of CSHCN in M-MC experienced high 

levels of care denial and that these levels were higher than children without special health care 
27

needs. In sum, two of the examined studies reported reduced access in M-MC, 4 improved 

access in M-MC, and two mixed access findings. 

 Utilization. As was found for access to care, utilization findings were decidedly mixed. 

Cooper et al.84 found that the proportion of children hospitalized with chronic conditions were 

similar during the periods before and after the introduction of a M-MC system. Finkelstein and 

colleagues77 reported that children with asthma in M-MC were more likely to receive care in 

emergency departments and were hospitalized more often than those in commercial managed 

care plans. However, both groups of children had similar rates of nonurgent and urgent 

ambulatory visits. Similar mixed findings were reported by Gadomsky et al.82 with CSHCN in 

M-MC eligible for SSI having higher emergency department use, hospitalization and 

ambulatory-sensitive hospitalizations but also a slight increase in preventive care than non-MC 

counterparts. Shatin et al.75 reported that children with chronic illness in M-MC had increased 

service use compared with commercial-MC counterparts. Grossman et al.85 reported that after 

the introduction of M-MC program, CSHCN had no change in emergency department visits but 

fewer hospitalizations and hospital days. Lieu et al.74 found that children with asthma in M-MC 

had greater hospital utilization than those in commercial managed care while Mitchell et al.78

reported no differences in hospital, physician, dentist and prescription drug services among 

CSHCN. 

 In sum, the reviewed studies reported four findings that M-MC was associated with reduced 

utilization, three improved utilization, and five that showed no difference with the compared 

populations. 

 Quality of Care. Two studies reported improved quality of care in M-MS. Cooper et al.84

reported that there were fewer enrollment gaps among CSHCN after M-MS was instituted. 

Grossman et al.85 found that certain groups of CSHCN had improved quality of care indicators in 

M-MC; however, most of the studied children had similar quality indicators. Lieu et al.74 found 

no differences in quality indicators between children with asthma in M-MC and those in 

commercial managed care. Finkelstein et al.77 found that children with asthma in M-MC had 

similar prescriptions written for controller medications but fewer of these were actually 

dispensed to the children in the M-MC group. 

 In sum, one study found reduced quality indicators associated with M-MC, two reported 

improved quality measures in M-MC systems, and three reported no quality differences between 

M-MC and comparison populations. 

Satisfaction. Satisfaction findings were reported in 4 of the examined studies. Mele and 

Flowers70 and Millar et al.87 both reported reduced parental satisfaction among CSHCN enrolled 

in M-MC. Mitchell and Gaskin79 however, reported improved parental satisfaction in M-MC, 

particularly in office visit wait time, office hours, telephone medical advice and specialist care. 

Grossman et al.85 and Mitchell et al.78 reported no differences in parental satisfaction between the 

compared groups. Thus, two reported worse satisfaction for M-MC, one improved satisfaction 

and one no difference. 

 Expenditures. Interestingly, there was no study that indicated that children in M-MC had 

reduced health care expenditures, although only two addressed this factor. Chan and 

Vanderberg76 reported that M-MC was associated with higher costs in general but reduced 

claims for mental health care than their M-FFS counterparts. Grossman et al.85 found no 

difference in costs after M-MC was introduced. 

 
28

 Outcomes. There were no studies that directly assessed health outcomes. However, Lieu et 

al.74 assessed reported asthma physical health and found no difference between the M-MC and 

commercial managed care groups of children with asthma. 

Family Functioning. There were no studies that assessed family functioning. 

Summary of Review Findings

 Despite the fact that large numbers of CSHCN are being moved into managed care programs, 

there are a relatively small number of peer-reviewed studies documenting the impact of such 

programs on this vulnerable population of children. In total, the numbers of reviewed articles is 

16, representing 14 separate projects. One article describes an RCT, and 15 articles describe 

non-randomized comparative studies. The samples of children with special health care needs 

ranged in size from zero (studies where the subjects were the directors of state programs for 

Infants and Toddlers with Disabilities (ITDP or IDEA, Part C) or other key informants) to 3,839. 

 Assessing the strength of the body of evidence concerning this research involves judgments 

of study quality; it also includes how confident one is that a finding is true and whether the same 

finding has been detected using a range of studies or study participants. In this regard, only two 

of the sixteen articles fully address all domains that characterize high-quality observational 

studies. In addition, this is a generally inconsistent body of evidence. This collection of 

scientific work consists of a small number of lesser quality studies that can be contradictory in 

their conclusions. 

 It should be noted that these studies do not explicitly evaluate care coordination directly. 

However, they do assess attempts to move CSHCN into a structure of care that is expressly 

justified, at least in part, as a means of improving the coordination of care for these children. 

Moreover, the outcome measures used in these studies, although far from ideal, are largely 

representative of the kinds of outcomes expected to respond to coordinative effects. 

 The basic premise here is that care coordination is sensitive to both structural initiatives and 

specific programmatic interventions. Particularly given the scale of the M-MC policy initiatives 

and the number and vulnerability of affected children, any consideration of care coordination for 

CSHCN in the United States today must address both programmatic and structural pathways of 

effect. 
29

Chapter 5. Summary and Recommendations

 Despite the importance of care coordination for children with special health care needs, there 

is a relative paucity of evaluative evidence to guide its development and implementation. This 

observation is not directed at challenging the contention that care coordination is helpful to 

children with special health care needs and their families. The experience of countless families 

and providers caring for children with complex medical needs and the face validity of the goals 

of care coordination provide sufficient justification for maintaining care coordination’s central 

role in shaping both child health practice and policy. 

 Rather, the primary challenge generated by this critical review of the relevant literature is 

whether current approaches to care coordination for CSHCN can substantially improve the 

quality of care for these children under current practice structures and policies. Framed 

somewhat differently, the current knowledge base seems inadequate to identify which care 

coordination strategies are most likely to be useful in any given practice setting. 

 The following sections summarize the central considerations informing this general 

assessment. They represent the primary findings of this review, interpreted and organized to help 

define the outstanding analytic issues concerning care coordination for CSHCN and 

recommendations for further research. 

Analytic Approach and Definitions 

 This technical review documents that the variety of analytic strategies that have been 

employed in evaluating care coordination for CSHCN not only reflects diverse practice and 

policy settings but also a remarkable analytic creativity in addressing this issue with relatively 

limited available resources. In addition, definitional issues continue to make the comparison of 

published studies difficult and more importantly, have helped create a confusing context for the 

assessment of program characteristics and ultimate effects. The most important of these analytic 

and definitional issues are summarized below, with each followed by a corollary 

recommendation. 

 

Heterogeneity in Identifying CSHCN

Considerable progress has been made in providing useful methods for defining and identifying 

CSHCN. However, there remains considerable variation in analytic approaches and definitions 

in the available literature. In addition, there remains a gap between recommended definitions for 

CSHCN and datasets with sufficient information to utilize these definitions in large populations 

of children. This is of particular importance as administrative datasets become available for 

research, monitoring and evaluation. Also worthy of special note is the observation that when 

the generally recommended definition of CSHCN is used, the group so defined is highly 

heterogeneous. Indeed, illness severity and functional impact are inherently continuous variables 

but the definition is largely used to make categorical yes/no designations. It should not be 

surprising therefore, that different programs or policies may find alternative or more restrictive 

definitions better suited to meet their evaluative needs. 

Recommendation: Generate Consensus on Definition Use. The literature regarding 

CSHCN definition has been characterized by a search for a “preeminent” or at least consistent 

definition. However, it might prove useful to reexamine the growing experience with the MCHB 
30

definition, not to reconsider its content but rather to develop more consistent methodologic 

strategies to enhance its programmatic and analytic utility. For example, a fuller embrace of the 

definition as a programmatic screener or survey instrument might be enhanced if it were 

accompanied by agreed-upon, standard sets of supplementary variables that would be of direct 

use for programs and researchers concerned with subsets of CSHCN or trends in the 

epidemiology within the broad CSHCN population. 

 

Parent and Clinician Roles in Coordinating Care

Although there are a variety of approaches to care coordination,25 in the pediatric literature there 

are differences in how the respective roles of parents and clinicians are framed and emphasized. 

In general, the use of the medical home concept has largely emphasized the central role of the 

clinician, and particularly the pediatrician. Other care coordination strategies have focused on 

the coordinative capacities of the parent and the utility of programmatic supports that can 

strengthen this role. While it is clear that any constructive care coordination model for children 

must include both parents and clinicians, there remain important differences that should be 

recognized, if not addressed, in shaping care coordination strategies. For example, there is 

growing interest in expanding reimbursement to clinicians for coordinative activities. This, in 

turn, may involve a formalization of the clinician’s responsibilities for care coordination which, 

in some instances, may conflict with some care models that elevate and support a primary 

parental role. Such considerations may also become increasingly important as the practice of 

pediatrics responds more fundamentally to the challenges of childhood chronic disease in the 

years to come.88 

 Recommendation: Integrate More Fully Parental and Clinician Roles in Care 

Coordination for CSHCN. Purposeful efforts to integrate the conceptual approaches and the 

various constituencies together should be strengthened. Clearly, the different coordinative 

approaches need not be mutually exclusive and the respective roles of parents and clinicians 

should be expected to vary in different settings or even as a child grows and develops. However, 

this review of care coordination for CSHCN suggests that important differences in approach 

exist and that they are best identified and addressed as part of the larger effort to develop 

coherent and collaborative care coordination strategies for CSHCN. 

Assessing the Impact of Care Coordination Interventions for 

CSHCN 

Inadequate Evaluation of Care Coordination Strategies

 The number and quality of studies evaluating different care coordination strategies for 

CSHCN do not provide a strong empirical base for reaching general conclusions or assessing 

specific programmatic components of care coordination strategies for CSHCN. This assessment 

is not intended to suggest inaction in developing care coordination initiatives for CSHCN but 

rather some critical caution in shaping such programs in different practice and policy settings. 

 Of particular note is the lack of rigorous study design in the reviewed evaluations. In part, 

this reflects the relatively poor resource base of these studies. However, it may also reflect 

inadequate disciplinary connections between those focused on the provision of care to CSHCN 
31

and those developing new methods to evaluate clinical programs and improve the quality of 

health care. 

 Recommendation: Expand the Evaluation of Care Coordination Programs for CSHCN. 

Support for high quality evaluations of coordination interventions is desperately needed, 

particularly regarding health outcomes and costs. This enhanced effort should include: 

• Greater emphasis on identifying the specific aspects of coordination particularly relevant 

to CSHCN and clearly describing how the implemented interventions address these 

discrete components of coordination; 

• Mechanisms to enhance disciplinary interaction between care coordination programs and 

quality improvement methodologists to generate more rigorous evaluative strategies. 

 Given the growing pressure for greater efficiencies in delivering health care services in 

general and for the chronically ill in particular, there would seem to be important opportunities to 

generate an expanded evaluative agenda. 

Evaluating Replications of Promising Care Coordination Programs 

 Only one of the reviewed care coordination programs represented a replication (albeit 

modified) of a prior care coordination model.45 Although different programs components are 

likely to be more useful in different practice settings, there could be some benefit in supporting 

the critical replication or scaling up of successful coordination models. Of particular note are the 

approaches reflected in the Pediatric Alliance for Coordinated Care (PACC) developed by 

Palfrey and colleagues.44 This program could serve as a useful starting point for such replication 

efforts since it represents perhaps the most relevant and best evaluated coordination approach for 

primary care practices. 

 Recommendation: Support for the implementation and continued evaluation of PACC 

and related models should be enhanced. 

Care Coordination and Practice Structure and Policy 

 One of the basic observations made in this review is that the implemented care coordination 

efforts varied considerably and were related to different structures of child health care delivery 

and practice. This point has been made by Shenkman and colleagues89 and suggests that care 

coordination interventions will likely need to be adapted for different settings. 

 Recommendation: Link Care Coordination Program Development to Practice and 

Policy Reform. Given the dynamic nature of health care delivery in the United States, this 

relationship between care coordination components and practice structures also suggests that the 

findings of any evaluation of care coordination for CSHCN should be interpreted within its 

historical context. Careful consideration should be given as to the relevance of the evaluated 

experience to current practice and policy trends. Therefore, as practice structures undergo 

change, the challenges and opportunities for coordination programs will change as well. The 

concern is that longstanding child health practice patterns may be increasingly out of step with 

the evolving epidemiology of childhood conditions and the growing efficiency demands of 

health policy reform.9

 This may be particularly true in meeting the enhanced, and often time 
32

consuming needs of CSHCN. Accordingly, efforts to enhance care coordination for CSHCN 

should be informed by a close consideration of practice and policy requirements. 

Managed Care for CSHCN Enrolled in Medicaid 

Lack of Child-focused Metrics for Assessing the Performance of 

Managed Care Systems for Poor CSHCN

 Of note, while the reviewed studies utilized a variety of outcome measures, none of these 

were focused on measuring health outcomes directly. 

 Recommendation: Develop Performance Measures of Direct Relevance to CSHCN. 

Despite progress in developing performance measures for a variety of mainly adult health 

conditions, there are no standard performance measures of any meaning for CSHCN being 

utilized to assess either the capacity or performance of health plans or practices. 

Inadequate Information on the Impact of Managed Care for CSHCN

 The implementation of managed care programs for CSHCN enrolled in Medicaid is moving 

forward rapidly despite an extremely weak knowledge base regarding its ultimate impact on the 

health of enrolled children and costs. 

 Recommendation: Urgently Expand the Evaluation of Managed Care for CSHCN. 

There is a critical and immediate need to assess the impact, problems, and missed opportunities 

associated with managed care strategies for CSHCN enrolled in Medicaid and other public 

programs for poor children. Special attention should be paid to documenting relevant 

coordinative components of the implemented programs and particularly, their impact on the 

coordination of care. Great caution should be exercised, therefore, in making broad judgments 

regarding the problems or benefits associated with this approach.
33

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A-1

Appendix A: Summary of Quality Assessment Criteria* 

Domains Critical Elements 

Study question Clearly focused and appropriate question 

Study population Description of study populations 

Comparability of 

subjects 

-Specific inclusion/exclusion criteria applied to all groups 

-Comparability of groups at baseline 

-Study groups comparable to non-participants with regard to confounding 

factorsg

-Use of concurrent controls 

-Comparability of follow-up among groups at each assessment 

Exposure or 

intervention 

Clear definition and measurement of exposure or interventiongg

Outcomes Clear definition and measurement of outcomes 

Statistical procedures Assessment of confounding factorsg

Results Measurement of magnitude of effect for outcomes (e.g., odds ratio (OR) or 

relative risk (RR)) 

Discussion Conclusions supported by results, with biases and limitations taken into 

consideration 

Project funding or 

sponsorship 

Type and source of support for study 

* SOURCE: West S, King V, Carey TS, et al. Systems to Rate the Strength of Scientific Evidence. Evidence Report/Technology 

 Assessment No. 47 (Prepared by the Research Triangle Institute-University of North Carolina Evidence-based Practice Center 

 under Contract No. 290-97-0011). AHRQ Publication No. 02-E016. Rockville, MD: Agency for Healthcare Research and 

Quality. April 2002. 

g Confounding is the alteration of the effect of one risk factor by the presence of another. Age, gender and socioeconomic status 

often are confounding factors because children with different values of these may be at differential risk of problem or disease. 

Confounding can be controlled by restricting inclusion criteria, by matching groups on the confounding factor, or by including 

the confounding variable in statistical analyses. 

gg Specific exposure and outcomes definitions help to address measurement bias, the systematic error that occurs when 

measurement methods are consistently different between groups in the study.