QUALITY OF CARE Assessing Managed Care For ...

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challenges for the managed care plans that treat them. As health plans step up their demands for monitoring patient care, children's needs should not be ...
Cite this article as: K Kuhlthau, D K Walker, J M Perrin, L Bauman, S L Gortmaker, P W Newacheck and R E Stein Assessing managed care for children with chronic conditions Health Affairs 17, no.4 (1998):42-52 doi: 10.1377/hlthaff.17.4.42

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At the Intersection of Health, Health Care and Policy

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Health Affairs is published monthly by Project HOPE at 7500 Old Georgetown Road, Suite 600, Bethesda, MD 20814-6133. Copyright © by Project HOPE - The People-to-People Health Foundation. As provided by United States copyright law (Title 17, U.S. Code), no part of may be reproduced, displayed, or transmitted in any form or by any means, electronic or mechanical, including photocopying or by information storage or retrieval systems, without prior written permission from the Publisher. All rights reserved.

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New recommendations for monitoring care as increasing numbers of children with chronic conditions join managed care plans. by Karen Kuhlthau, Deborah Klein Walker, James M. Perrin, Laurie Bauman, Steven L. Gortmaker, Paul W. Newacheck, and Ruth E.K. Stein PROLOGUE: Children with chronic illnesses pose special

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challenges for the managed care plans that treat them. As health plans step up their demands for monitoring patient care, children’s needs should not be overlooked in whatever measurement scheme is put to use. The most widely used scheme, the Health Plan Employer Data and Information Set (HEDIS), has many limitations in its applications to populations of children with chronic conditions, but it is the best measure that currently exists. This paper evaluates the strengths and weaknesses of HEDIS as it applies to chronically ill children and offers recommendations for improving it. Karen Kuhlthau is associate director of the General Pediatrics Research Unit at Massachusetts General Hospital (MGH) in Boston. Deborah Klein Walker is the assistant commissioner for the Bureau of Family and Community Health, in the Massachusetts Department of Public Health. James Perrin, a pediatrician, is an associate professor of pediatrics at Harvard Medical School and director of the Division of General Pediatrics at MGH. Laurie Bauman is a professor of pediatrics at the Albert Einstein College of Medicine in New York City. Steven Gortmaker is a senior lecturer in the Department of Health and Social Behavior, Harvard School of Public Health. Paul Newacheck is a professor of health policy and pediatrics in the Institute for Health Policy Studies and the Department of Pediatrics, University of California, San Francisco, School of Medicine. Ruth Stein is a professor and vice-chairman of pediatrics at the Albert Einstein College of Medicine. She also is the school’s director of academic affairs. A F F A I R S

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Assessing Managed Care For Children With Chronic Conditions

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a nag e d ca re c ove r s an increasing number of children with chronic conditions, through both private health plans and Medicaid (including disabled populations covered through Supplemental Security Income [SSI]).1 Managed care may improve comprehensiveness of care and coordination among providers of care for children with chronic conditions and their families. However, the cost control strategies associated with managed care may reduce access and quality for children with chronic conditions more than they do for children without such conditions.2 Thus, monitoring care for this population is a priority. Three issues distinguish the care of children with chronic conditions from that for adults; these issues have implications for monitoring their care. First, the epidemiology of childhood chronic conditions shows that children, unlike adults, face a large number of conditions, most with relatively low prevalence.3 Childhood diabetes, for example, has a prevalence of 1.8 per thousand children.4 In a plan of 90,000 covered lives with approximately 30,000 children, only fifty-four children will have diabetes. Most other diagnoses will affect even fewer children. Consequently, monitoring any single condition (as is typical in many current plans) provides an inadequate view of the overall quality and outcomes of care for children with chronic conditions. Second, childhood chronic conditions need to be managed and monitored in the context of a child’s development, because the onset, impact, treatment, and relevant outcomes of chronic conditions vary substantially with the various developmental stages.5 Third, children’s dependence on adults means that care must be monitored in the context of a child’s family. Elsewhere we have outlined the design and implementation of a comprehensive monitoring system designed specifically for children with chronic conditions.6 However, given resource constraints, development of a comprehensive monitoring system appears unlikely in the near future. For this reason, revisions and enhancements of existing performance, quality improvement, and monitoring systems are more realistic, at least in the short term. To date, however, H E A L T H

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ABSTRACT: This paper reviews opportunities to monitor managed care for children and adolescents with chronic conditions and considers how well the Health Plan Employer Data and Information Set, version 3.0 (HEDIS 3.0), assesses care for these children. We propose four steps to strengthen the applicability of HEDIS to children with chronic conditions: (1) develop methods of identifying and monitoring groups of children with chronic conditions; (2) report HEDIS indicators for these children separately from those for other children; (3) develop and implement consumer and provider surveys that elicit information specific to these populations; and (4) develop specific structure, process, and outcomes indicators for children with chronic conditions.

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Strengths And Weaknesses Of HEDIS 3.0

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n Development of HEDIS. The National Committee for Quality Assurance (NCQA), a joint organization of health plans and purchasers, developed HEDIS to “document the ‘value’ of a health plan” and “develop performance indicators to respond to their [employers’] needs.”8 The main purpose was to monitor the performance of commercial plans. One-third of the nation’s 550 managed care organizations used HEDIS by the end of 1993. HEDIS 3.0 contains sections on (1) effectiveness of care, (2) access/availability of care, (3) satisfaction with experience of care, (4) health plan stability, (5) use of services, (6) informed health care choices, (7) health plan descriptive information, and (8) cost of care. We do not review or evaluate the cost-of-care section in this paper. Recent HEDIS revisions have addressed special issues for Medicaid populations. Medicaid has particular importance for children’s health care: Children made up 51 percent of the Medicaid population in 1995.9 Approximately 25 percent of U.S. children received health insurance via Medicaid in 1994.10 To address differences in the covered populations (for example, the high numbers of women and children covered by Medicaid) and the specific needs of state Medicaid agencies, the NCQA collaborated with the Health Care Financing Administration (HCFA), the American Public Welfare Association (on behalf of the state Medicaid directors), and others who were knowledgeable about the populations to create a Medicaid HEDIS. The Medicaid HEDIS working group evaluated HEDIS 2.0 (the then current commercial version) and solicited advice from other key groups to identify performance measures appropriate for Medicaid populations. HEDIS 3.0 integrates the Medicaid HEDIS and HEDIS 2.5 measures and applies most measures to enrollees covered by either Medicaid or commercial insurance.11 n Limitations. The application of HEDIS in state Medicaid proA F F A I R S

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there has been little examination of existing monitoring tools and the modifications necessary to apply them to children with chronic conditions and their families. This paper reviews the most recent version of the Health Plan Employer Data and Information Set, version 3.0 (HEDIS 3.0), the major monitoring system used by managed care organizations to assess quality and appropriateness of care. HEDIS 3.0 applies to children with either commercial or Medicaid coverage.7 Following our evaluation of the strengths and weaknesses of HEDIS 3.0 as a tool to monitor the care of children with chronic conditions, we make specific recommendations to improve the capability of HEDIS to monitor the care of children with chronic conditions.

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grams has been subject to criticism. HCFA does not now require that states use HEDIS to monitor care provided to Medicaid populations. Given the potentially high cost of implementing the complete data set, states may choose to use selected HEDIS indicators instead.12 However, using only part of HEDIS reduces the ability to compare indicators, as state Medicaid offices may not use any or all indicators and consumers and policymakers do not have access to comparable information. HEDIS 3.0’s data-collection methodology has some other important limitations. First, HEDIS 3.0 allows plans to use different methodologies for data collection, further reducing the ability to compare plans (because differences among plans could reflect either methodological or real differences). Second, HEDIS 3.0 requires a minimum period of enrollment, which excludes persons who are at risk for missing health services because of recent or periodic enrollment. For example, childhood immunization status is measured for children continuously enrolled for twelve months immediately preceding their second birthday (with one break in coverage up to fortyfive days allowed). Although some minimum length of enrollment is necessary to allow plans time to provide services, current requirements exclude large numbers of high-risk children from the monitoring system. Approximately half of all Medicaid managed care beneficiaries are continuously enrolled in a single managed care plan for less than one year.13 Third, some indicators apply only to persons with one type of plan; this approach eliminates the possibility of comparing Medicaid and commercially covered populations. HEDIS 3.0 also has limitations for monitoring the health of children with chronic health conditions. Exhibit 1 lists the key childrelevant measures included in HEDIS 3.0 and notes which measures apply exclusively to the Medicaid population and which to the commercial population. n Service use and effectiveness of care. Descriptors of service use provide only limited information on general aspects of child health and health care, such as well-child visits; the frequency of myringotomy and tonsillectomy; use of different modes of care; average lengthof-stay of newborns; frequency of ongoing prenatal care; outpatient drug use; and use of mental health and chemical dependency services. Immunization status, follow-up after hospitalization for mental illness, treatment of ear infections, and perinatal health indicators are also measured in the effectiveness-of-care section. None of these measures is specific to children with chronic conditions; however, they could help to determine if children with and without chronic health conditions received similar levels of primary care and preventive services if data were presented separately for each group.

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EX HIB IT 1 Key Measures Included In HEDIS 3.0 That Are Relevant To Children Health plan descriptive information

Access to/availability of care

Well-child visits by agea Frequency of myringotomy and tonsillectomy a Utilization: (1) acute inpatient general hospital; (2) ambulatory care; (3) inpatient nonacute care a

Pediatric mental health services, chemical dependency services, narrative descriptionb,c Total enrollment, enrollment by payer (Medicaid disabled population reported separately)a

Children’s access to primary care providers b,c Availability of primary care providers, mental health/chemical dependency providers, and obstetrical and prenatal care providers a

Discharges and average length-ofstay maternity care, newborn; vaginal birth after cesarean section ratea

Board certification/residency completion and recredentialinga Case management, narrative description a

Low-birthweight deliveries at facilities for high-risk deliveries and neonates b,c Annual dental visit and availability of dentistsb,c

Mental health utilization: (1) inpatient discharges and average length-ofstay; (2) inpatient, day/night care, and ambulatory services; and (3) readmission for selected disorders a

Utilization and risk management, narrative description, provider compensation, physicians under capitation, quality assessment, recredentialing a

Initiation of prenatal care a Specifications for multilingual health plan staffb Specifications for out-of-plan interpreter services a

Chemical dependency utilization: Arrangements with public health, (1) inpatient discharges and average educational, and social services length-of-stay; (2) inpatient, day/ entitiesa night care and ambulatory services; Preventive health care and health and (3) readmission for selected promotion a disorders a Unduplicated count of Medicaid Outpatient drug utilizationa members, diversity of Medicaid Frequency of ongoing prenatal careb,c membershipb,c

Effectiveness of care

Satisfaction with care

Health plan stability

Childhood and adolescent immunization statusa Prenatal care in first trimestera Low birthweighta,c

Satisfaction surveyd Description of survey informationa

Disenrollment (commercial only) Provider turnover, primary care, and specialty care (for specialty care, Medicaid only)a

Checkups after deliver ya Treatment of children’s ear infectionsa Follow-up after hospitalizations for mental illnessa SOURCE: Adapted from HEDIS 3.0 (Health Plan Employer Data and Information Set). NOTE: Because Medicare covers very few children , we do not note which indicators are include d for Medicare populations. a Both Medicaid and commerciall y insured populations. b Medicaid only. c Indicator being evaluated in the Medicaid population for possible use in the commerciall y insured population. d The U.S. Department of Health and Human Services is developing surveys for Medicare and Medicaid beneficiaries through its Consumer Assessment of Health Plans (CAHPS).

n Health plan information. The health plan descriptive information section describes members by age, sex, and type of eligibility, including children enrolled in Medicaid through their disability status (mainly, participation in the SSI program). SSI eligibility status could provide a proxy measure for children with chronic conditions, although many children with chronic conditions have Medicaid but do not meet the stringent SSI disability criteria, and many children with chronic conditions do not meet the SSI income requirement. Thus, program eligibility indicators will exclude many H E A L T H

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Use of services

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“HEDIS 3.0 falls short as a tool for effective monitoring of managed care for children with chronic conditions.”

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children with chronic conditions. Although SSI eligibility is a relatively easy definition to implement for the Medicaid population, we propose alternative strategies later in this paper. The health plan information section also requires plans to provide information on board certification of plan physicians, with pediatric subspecialists reported separately. An important aspect of care is access to specialists with skills and experience in treating children with chronic conditions. Plans also must describe their case management services; arrangements with public health, educational, and social services entities; pediatric mental health services; and chemical dependency services (the latter two are required for the Medicaid population only). Since children with chronic conditions may require many of these services, documenting the plan’s policies is important for families. Plans also must describe their approach to preauthorization, specialty consultation, appeals, and defining medical necessity (all part of utilization management). n Access to and availability of care. HEDIS 3.0’s section on access to and availability of care includes children’s access to primary care providers (only required for the Medicaid population); availability of primary care providers and mental health/chemical dependency providers; dental visits (Medicaid only); language interpretation services; initiation of prenatal care; and whether lowbirthweight deliveries occur in facilities specializing in high-risk deliveries and neonates (Medicaid). The measures of primary care provider access and availability may indicate whether care coordination originates with the primary care provider. The health plan stability section examines disenrollment and provider turnover. n Satisfaction with care. HEDIS 3.0 requires participating plans to conduct a satisfaction survey for commercial enrollees. HEDIS 3.0 refers plans to the Agency for Health Care Policy and Research (AHCPR)–sponsored Consumer Assessment of Health Plans (CAHPS) for use in the Medicaid population.14 Satisfaction surveys are potentially powerful tools, especially if administered confidentially and with questions designed to uncover areas of unmet need or problems with care. Requiring that the satisfaction surveys used for commercial and Medicaid enrollees contain the same (or a core subset of the same) satisfaction questions would ensure comparability between Medicaid and commercial enrollees. A recent collaborative agreement between the NCQA and the

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Recommendations

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HEDIS is currently the best-known system of quality measurement in managed care, whether funded by private or public dollars, or both.16 Adaptations and additions to the current HEDIS 3.0 system will allow collection of data regarding a small but highly vulnerable and costly population of children and youth in both Medicaid and non-Medicaid who are enrolled in health plans. As an important initial step, HEDIS should make all indicators required, regardless of the type of plan, and require one methodology for each indicator. Our further recommendations focus on four broad areas. n Identify and monitor children with chronic conditions in all plans. The first step would be to implement mechanisms to consistently identify the population. The literature contains no single, agreed-upon definition of this population. An inclusive definition would increase the number of children identified and allow comparison of subgroups of children. Some options (less expensive) use existing administrative data in plans; others require additional data collection either at enrollment or periodically thereafter. Administrative data options include the use of Medicaid disability (SSI) categories. As we indicated earlier, however, the SSI definition excludes many children with chronic conditions whose care should be monitored. An alternative is to use diagnoses found in claims data or clinical records. Several groups (such as the National Association of Children’s Hospitals and Related Institutions and state Maternal and Child Title V programs for children with special health care needs) have piloted such a categorical definition of chronic conditions based on International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes.17 DiagA F F A I R S

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Foundation for Accountability (FACCT), with public and private support, will lead to targeted efforts to develop a pediatric measurement set for HEDIS revisions and other methods of monitoring care for children. Although the initial work in this area will likely focus on children in general, later efforts by this coalition will address measures focused on children with chronic conditions. In summary, HEDIS 3.0 falls short as a tool for effective monitoring of managed care for children with chronic conditions. Indeed, in the previous version of HEDIS for Medicaid, the developers noted this shortcoming and placed a high priority on identifying such indicators. 15 HEDIS 3.0 lacks a method to define the population of children with chronic conditions beyond disability enrollment based on SSI criteria (which is collected only for the Medicaid population). In addition, HEDIS lacks specific structure, process, and outcomes measures for this population.

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nostic categories are limited in that they provide no information on the severity of conditions, yet they are easily implemented and capture a reasonably broad and well-defined set of children with chronic conditions. Other promising approaches include measures that combine functioning, severity, and service need. These approaches determine whether the child has a chronic condition and then its effects in such areas as the child’s usual activities or need for additional services. Examples include the set of questions developed by Ruth Stein and colleagues, the National Center for Health Statistics screen developed for the National Health Interview Survey on Disability, the questions used by the New England SERVE Regional Task Force on Quality Assurance, and plans to operationalize the Maternal and Child Health Bureau’s recent definition of children with special health care needs.18 Optimally, plans could implement these definitions as part of the intake process. Because chronic illnesses may not be present at the time of managed care enrollment, not all chronic illnesses would be identified then, and some periodic reassessment of unidentified children and adolescents would be necessary, through either a census of plan members or reapplication at well-child visits. There should be a major effort among all stakeholders (purchasers, providers, plans, and parents) to agree on a method of defining children with chronic conditions using functional criteria, and all plans should use that method to maximize comparability across plans. The planning process for the next version of HEDIS provides such an opportunity. n Apply all HEDIS 3.0 indicators to permit a comparison of children with and without chronic conditions. Providing plan performance statistics for children with chronic conditions separately from other children would permit a comparison of the two groups. These data would alert plans to deficiencies for children with chronic conditions. Children with chronic conditions often risk missing routine preventive care because the complex nature of specialty care can divert attention from more routine matters and because it is unclear which provider should take responsibility for such matters (gatekeepers may solve this potential problem in new managed care systems). n Develop and implement periodic surveys of families and providers regarding quality of care. We recommend periodic surveys of parents of children with chronic conditions to help plans assess families’ views of the adequacy of services. Developed with parents’ input, such surveys could identify unmet needs for either health services or their coordination with other services. Questions should address coordination of the child’s care within and outside the plan, availability and use of appropriate pediatric subspecialists,

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burden of health care carried by the family, assessment and treatment of physical and mental health concerns, and gaps in services. We also recommend the development of a survey for primary care providers in the plan who coordinate care for children with chronic conditions and hence control access to needed pediatric subspecialists, mental health providers, and rehabilitation therapies. These providers are in the best position to judge what is easily available, is family friendly, and meets pediatric standards. A provider survey would give important feedback on the plan’s quality. Because plans pay providers, an independent agency should conduct and analyze these surveys to ensure that providers will feel confident enough to provide an honest assessment of the plan. n Add structure, process, and outcome indicators specific to children with special health care needs. Much of quality assessment in HEDIS 3.0 focuses on collecting information on structure, process, and outcomes of health care. Yet few indicators provide information focused on the special needs of children with chronic conditions and their families. We recommend adding such indicators that would apply to children with a variety of conditions. Since many childhood conditions are rare, monitoring single conditions would measure only small numbers of children in any single health plan. In addition, there is a potential for bias, since plans would know what childhood conditions HEDIS would monitor. Structural indicators. Measures of structure should document the availability of specialized therapists both in and outside the plan for children with chronic conditions. In addition, indicators of access to mental health specialists should be included to compare access for this population with access for others. Plans also should document the type of appeals processes in place for disputes over durable medical equipment and other adaptive services, as well as the policies concerning parents’ access to records and their role in making decisions concerning their child’s care. Plans also should document mechanisms for answering parents’ questions about covered services, the extent to which the medical records are integrated across sectors, and to what extent the plan’s advisory group comprises parents of children with chronic conditions. Mechanisms for answering questions would allow parents, many of whom are already involved in providing a substantial level of care and care coordination for their children, an access point to facilitate care. Integrated medical records will help to ensure that children do not receive duplicate or unnecessary testing or care and will allow multiple providers to review and coordinate care plans. Process indicators. Measurement of process should include the process of providing technically excellent care (such as quality-ofA F F A I R S

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he as se ss m en t o f ca r e for children with chronic conditions in managed care settings requires special adaptations and attention to specific indicators of their care and health status. In its current form, HEDIS 3.0 provides little information regarding care for children with chronic conditions, both because it contains few indicators that address their care and because children with such conditions are not specifically identified in assessments. We have proposed four steps to strengthen the applicability of HEDIS 3.0 to this group of children and adolescents. With these actions, parents, payers, and health professionals could begin to monitor the care of children with chronic conditions within and across managed plans. The research for this paper was supported in part by project MCJ-25R026 from the Maternal and Child Health Program (Title V, Social Security Act), Health Resources and Services Administration, U.S. Department of Health and Human Services. The authors acknowledge the assistance of Dennis Drotar and I. Barry Pless.

NOTES 1. D.A. Freund and E.M. Lewit, “Managed Care for Children and Pregnant Women: Promises and Pitfalls,” Future of Children (Summer/Fall 1993): 92–122; Association of State and Territorial Health Officials, “Public Health Strategies for Medicaid Managed Care,” ASTHO Access Report (September 1995): 1–8; and Kaiser Commission on the Future of Medicaid, “Medicaid and Managed Care,” H E A L T H

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care protocols). In addition, it should measure the extent to which services are comprehensive, coordinated, continuous, prevention oriented, family centered, and culturally competent.19 Another important area for process assessment is the degree to which the health professionals in a plan link with professionals in the education system concerning the care of children with chronic conditions. Outcome indicators. To assess health status and outcomes for broad categories of children and adolescents with chronic conditions requires use of a health status measure applicable across diverse health conditions. For children, few such measures exist, especially ones that cover several domains of child functioning. Several available measures assess specific areas of functioning (for example, mobility, emotional, or developmental). However, we recommend the use of a comprehensive measure of child health. A few measures of child functioning show promise. These include the measure developed by Stein and colleagues (FS-IIR, applicable to children ages zero to sixteen), the child health questionnaire (applicable to children over age five) developed by Jeanne Landgraf and colleagues, and the “Adolescent Child Health and Illness Profile” developed by Barbara Starfield and colleagues.20 Each of these can provide periodic assessments of child health outcomes.

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Medicaid Facts (May 1996). 2. P.W. Newacheck et al., “Monitoring and Evaluating Managed Care for Children with Chronic Illnesses and Disabilities,” Pediatrics (November 1996): 952–958; E.J. Jameson and E. Wehr, “Drafting National Health Care Reform Legislation to Protect the Health Interests of Children,” Stanford Law and Policy Review Journal 5 (1993): 1; and J.M. Neff and G. Anderson, “Protecting Children with Chronic Illness in a Competitive Marketplace,” Journal of the American Medical Association (20 December 1995): 1866–1869. 3. S.L. Gortmaker and W. Sappenfield, “Chronic Childhood Disorders: Prevalence and Impact,” Pediatric Clinics of North America 31 (1984): 3–18. 4. S.L. Gortmaker, “Demography of Chronic Childhood Diseases,” in Issues in the Care of Children with Chronic Illnesses, ed. N. Hobbs and J.M. Perrin (San Francisco: Jossey-Bass, 1985), 135–154. 5. Jameson and Wehr, “Protecting Children with Chronic Illness.” 6. Newacheck et al., “Monitoring and Evaluating Managed Care for Children.” 7. National Committee for Quality Assurance, Health Plan Employer Data and Information Set 3.0: Technical Specifications, vol. 2 (Washington: NCQA, January 1997). 8. NCQA, HEDIS, version 2.0 (Washington: NCQA, 1993). 9. Health Care Financing Administration, Bureau of Data Management and Strategy, data from the Division of Health Care Information Services, Table 13. 10. P.W. Newacheck et al., “The Effect on Children of Curtailing Medicaid Spending,” Journal of the American Medical Association (8 November 1995): 1468–1471. 11. NCQA, HEDIS 3.0: Technical Specifications , vol. 2. 12. “Measure by Measures,” Hospitals and Health Networks (March 1996): 53–56. 13. NCQA, Medicaid HEDIS (Washington: NCQA, 1996). 14. U.S. Department of Health and Human Services Consumer Assessment of Health Plans Study, Version 1.0, as cited in NCQA, HEDIS 3.0: Technical Specifications, vol. 2. 15. NCQA, Medicaid HEDIS: An Adaptation of NCQA’s Health Plan Employer Data and Information Set, 2.0/2.5 (Washington: NCQA, December 1995). 16. J. Burns, “Measuring Health Care Quality Employers Shop for Value,” Medical Benefits (April 1996): 1–12. 17. J.H. Muldoon, J.M. Neff, and J.C. Gary, “Profiling the Health Service Needs of Populations Using Diagnosis-Based Classification Systems,” Journal of Ambulatory Care Management ( July 1977): 1–30; and Institute for Child Health Policy, The Directory of State Title V CSHCN Programs: Eligibility Criteria and Scope of Services (Gainesville, Fla.: University of Florida, 1996). 18. R.E. Stein, L.E. Westbrook, and L.J. Bauman, “The Questionnaire for Identifying Children with Chronic Conditions: A Measure Based on a Noncategorical Approach,” Pediatrics (April 1997): 513–521; P.F. Adams and M.A. Marano, “Current Estimates from the National Health Interview Survey, 1994,” Vital and Health Statistics 10 (Rockville, Md.: National Center for Health Statistics, 1995): 193; and New England SERVE, Assessing the Quality of ManagedCarefor ChildrenwithSpecialCare Needs: Summary of a Regional Survey of Families, Primary Care Providers, and Managed Care Organizations in New England (Boston: New England SERVE, March 1997). 19. National Association of Children’s Hospitals and Related Institutions, Pediatric Excellence in Delivery Systems, ed. M.A. Anthony (Alexandria, Va.: NACHRI, 1995). 20. R.E.K. Stein and D.J. Jessop, “Functional Status II(R),” Medical Care 28, no. 11 (1990): 1041–1055; J.M. Landgraf, L. Abetz, and J.E. Ware, Child Health Questionnaire (CHQ): A User’s Manual, First Edition (Boston: Health Institute, New England Medical Center, 1996); and B. Starfield et al., “The Adolescent Child Health and Illness Profile: A Population-Based Measure of Health,” Medical Care 33, no. 5 (1995): 553–566. A F F A I R S

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