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The Children’s Health Insurance Program Reauthorization Act Quality Measures Initiatives: Moving Forward to Improve Measurement, Care, and Child and Adolescent Outcomes

  • Denise Dougherty
    Correspondence
    Address correspondence to Denise Dougherty, PhD, Agency for Healthcare Research and Quality, 540 Gaither Rd, Rockville, Maryland 20850.
    Affiliations
    Agency for Healthcare Research and Quality, Rockville, Md (Dr Dougherty); Health Care Services and Medical Management Division, Minnesota Department of Human Services, St. Paul, Minn (Dr Schiff); and University of Washington Center for Child Health, Behavior, and Development, Seattle Children’s Hospital Research Institute, Seattle, Wash (Dr Mangione-Smith)
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  • Jeffrey Schiff
    Affiliations
    Agency for Healthcare Research and Quality, Rockville, Md (Dr Dougherty); Health Care Services and Medical Management Division, Minnesota Department of Human Services, St. Paul, Minn (Dr Schiff); and University of Washington Center for Child Health, Behavior, and Development, Seattle Children’s Hospital Research Institute, Seattle, Wash (Dr Mangione-Smith)
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  • Rita Mangione-Smith
    Affiliations
    Agency for Healthcare Research and Quality, Rockville, Md (Dr Dougherty); Health Care Services and Medical Management Division, Minnesota Department of Human Services, St. Paul, Minn (Dr Schiff); and University of Washington Center for Child Health, Behavior, and Development, Seattle Children’s Hospital Research Institute, Seattle, Wash (Dr Mangione-Smith)
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      Abstract

      In 2009, a publicly transparent evidence-informed process responded to the requirement of the Children’s Health Insurance Program Reauthorization Act (CHIPRA) legislation to identify an initial core set of recommended children’s health care quality measures for voluntary use by Medicaid and the Children’s Health Insurance Program, which together cover almost 40 million of America’s children and adolescents. Future efforts under CHIPRA will be used to improve and strengthen the initial core set, develop new measures as needed, and post improved core measure sets annually beginning in January 2013.
      This supplement aims to make available useful information about issues surrounding the initial core set and key concepts for moving forward toward improvement of children’s health care quality measures, children’s health care quality, and children’s health outcomes. The set of articles in this supplement includes a detailed description of how the identification of a balanced, grounded, and parsimonious core set of children’s health care quality measures was accomplished by means of an open, public process combined with an evidence-informed evaluation methodology. Additional articles note that Medicaid and Children’s Health Insurance Program (CHIP) officials put a high priority on children’s health care quality and desire better measures; that publicly insured children are more likely than privately insured children to experience severe, complex chronic conditions and experience poorer quality in some respects; and that some key CHIPRA topics did not yet have valid, feasible measures (eg, availability of services, duration of enrollment and coverage, most integrated health care settings, and some aspects of family experiences of care).
      Key stakeholders and observers provide commentary noting the unprecedented scope and nature of the CHIPRA legislation as well as noting areas in which the nation still needs to move to improve health care quality, including its measurement. These areas include greater engagement of families and health care providers in the quality measurement and improvement enterprises, collaboration across federal agencies, more emphasis on clinical effectiveness research to enhance the validity of children’s health care services and quality measures, and a need to maintain an emphasis on children as the nation expands health care coverage and attention to quality for all populations.
      This overview also notes areas of future priorities for measure enhancement and development, including inpatient specialty, health outcomes, and a focus on inequity.
      We and others contributing to this supplement consider the identification of the initial core set to be a significant initial accomplishment under CHIPRA. With sufficient attention to making the measures feasible for use across Medicaid and CHIP programs, and with technical assistance, voluntary use should be facilitated. However, the initial core set is but one step on the road toward improved quality for children. The identification of future challenges and opportunities for measure enhancement will be helpful in setting and implementing a future pediatric quality research agenda.

      Keywords

      The need to improve children’s health care quality across all domains (eg, safety, timeliness, effectiveness, equity, efficiency, patient centeredness, care coordination, health care delivery system infrastructure capability) is urgent.

      Institute of Medicine Committee on future directions for the National Healthcare Quality and Disparities Reports. Future Directions for the National Healthcare Quality and Disparities Reports. Washington, DC: IOM; April 2010. Available at: http://www.iom.edu/Reports/2010/Future-Directions-for-the-National-Healthcare-Quality-and-Disparities-Reports.aspx. Accessed February 21, 2011.

      • Homer C.
      Foreword: a great start and a long way to go.
      • Perrin J.
      • Homer C.J.
      The quality of children’s health care matters—time to pay attention.
      Children in the United States comprise 26% of the nation’s population and account for 1 out of 6 national health expenditure dollars.
      • Hartman M.
      • Catlin A.
      • Lassman D.
      • et al.
      US health spending by age, selected years through 2004.
      They receive only 47% of indicated clinical care.
      • Mangione-Smith R.
      • DeCristofaro A.
      • Setodji C.
      • et al.
      The quality of ambulatory care delivered to children in the United States.
      Racial, ethnic, and socioeconomic disparities in health care for children persist, as do differences by health insurance status and source.

      Agency for Healthcare Research and Quality. National Healthcare Quality and Disparities Reports. Available at: http://www.ahrq.gov/qual/measurix.htm. Accessed August 27, 2010.

      • Berdahl T.
      • Owens P.
      • Dougherty D.
      • et al.
      Annual report on health care for children and youth in the United States: racial/ethnic and socioeconomic disparities in children’s health care quality.
      In 2004, 41% of children’s health care expenditures were paid by public sources; and 12% came from family out-of-pocket contributions,
      • Hartman M.
      • Catlin A.
      • Lassman D.
      • et al.
      US health spending by age, selected years through 2004.
      with lower-income families paying higher shares out of pocket. Health care events during childhood can and do have both short- and long-term implications for the productivity and well-being of children and the nation.

      Miller MR, Elixhauser A, Zhan C. Patient safety events during pediatric hospitalizations. Pediatrics. 003;111(6 pt 1):1358–1366.

      • Rogowski J.A.
      • Horbar J.D.
      • Plsek P.E.
      • et al.
      Economic implications of neonatal intensive care unit collaborative quality improvement.
      This supplement to Academic Pediatrics addresses the opportunities in the recent passage of the Children’s Health Insurance Program Reauthorization Act (CHIPRA) to bring a national focus on children’s health care quality measurement and improvement.

      US Congress. Public Law 111-3, Children’s Health Insurance Program Reauthorization Act of 2009. Available at: http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_public_laws&docid=f:publ003.111. Accessed March 24, 2010.

      CHIPRA provides a compelling architecture for improving children’s health care quality and outcomes. The law calls for the identification of an initial core measure set to be used voluntarily to assess the state of children’s health care quality across and within state Medicaid and Child Health Insurance Programs (CHIP),

      Mangione-Smith R, Schiff J, Dougherty D. Identifying children’s health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process. Academic Pediatrics. 2011;11(suppl 3):S11–S21.

      reporting of these data to Congress and the public,
      US Department of Health and Human Services Secretary
      The Department of Health and Human Services Children’s Health Insurance Program Reauthorization Act Annual Report on the Quality of Care for Children in Medicaid and CHIP.
      improvement and strengthening of the initial core measures through grants and contracts, applicability of core measures across all public and private programs, the implementation and evaluation of a variety of health care quality improvement strategies by States,

      Mann C. A new era for State Medicaid and children’s health insurance programs [commentary]. Acad Pediatr. 2011;11(suppl 3):S95–S96.

      and regular updating of Congress on the state of children’s health care quality and outcomes.
      Although the need to measure and improve quality in public programs had been addressed previously in legislation,

      Centers for Medicare & Medicaid Services. Quality of Care Center, November 15, 2010. Available at: http://www.cms.gov/center/quality.asp. Accessed January 14, 2011.

      the combination of these areas of quality measurement and improvement in a single piece of national legislation was unprecedented at the time that CHIPRA was signed into law. Soon after, the American Recovery and Revitalization Act (ARRA) included provisions encouraging the use of health information technology to measure and improve quality, collect standardized data on patient demographics, and enhance the evidence base for health care quality.

      US Congress. American Recovery and Reinvestment Act of 2009 (Public Law 111-5). Available at: http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f:h1enr.pdf. Accessed January 18, 2011.

      In 2010, the Patient Protection and Affordable Care Act (ACA)

      US Congress. Patient Protection and Affordable Care Act of 2010 (Public Law 111-148). Available at: http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_bills&docid=f:h3590enr.txt.pdf. Accessed January 17, 2011.

      expanded quality measurement and improvement provisions similar to those in CHIPRA for adult populations,

      US Department of Health and Human Services Office of the Secretary. Medicaid program: initial core set of health quality measures for medicaid-eligible adults. December 30. Vol 75, No. 250. Identification of initial core measure set, request for comments, and request for priorities for future measure development. Available at: http://www.gpo.gov/fdsys/pkg/FR-2010-12-30/pdf/2010-32978.pdf. Accessed January 17, 2011.

      and added provisions to make measurement and improvement of health care quality for children more feasible.

      Fairbrother G, Simpson L. Measuring and reporting quality of health care for children: CHIPRA and beyond. Acad Pediatr. 2011;11(suppl 3):S77–S84.

      Kaiser Family Foundation. Summary of new health reform law. Focus on health reform. Available at: http://www.kff.org/healthreform/upload/8061.pdf. Accessed January 17, 2011.

      • Simpson L.
      • Schuster M.
      • Rosenbaum S.
      Health reform and beyond: delivering results for children.
      This supplement concentrates on the CHIPRA legislation, focusing in particular on the work used to identify an initial core set of children’s health care quality measures

      Mangione-Smith R, Schiff J, Dougherty D. Identifying children’s health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process. Academic Pediatrics. 2011;11(suppl 3):S11–S21.

      Bethell C, Kogan M, Strickland B, et al. A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations. Acad Pediatr. 2011;11(suppl 3):S22–S33.

      Co J, Sternberg S, Homer C. Measuring patient and family experiences of health care for children. Acad Pediatr. 2011;11(suppl 3):S59–S67.

      Hess C, deLone S. Medicaid and CHIP children’s health care quality measures: what states use and what they want. Acad Pediatr. 2011;11(suppl 3):S68–S76.

      Kenney G, Pelletier J. Monitoring duration of coverage in Medicaid and CHIP to assess program performance and quality. Acad Pediatr. 2011;11(suppl 3):S34–S41.

      Kuhlthau K. Measures of availability of health care services for children. Acad Pediatr. 2011;11(suppl 3):S42–S48.

      Sternberg S, Co J, Homer C. Review of quality measures of the most integrated health care settings for children and the need for improved measures: recommendations for initial core measurement set for CHIPRA. Acad Pediatr. 2011;11(suppl 3):S49–S58.

      and including the views of key stakeholders concerning the work still ahead to achieve the CHIPRA goals.

      Mann C. A new era for State Medicaid and children’s health insurance programs [commentary]. Acad Pediatr. 2011;11(suppl 3):S95–S96.

      Dougherty D, Clancy C. Transforming children’s health care quality and outcomes—a not-so-random non-linear walk across the translational continuum. Acad Pediatr. 2011;11(suppl 3):S91–S94.

      Greene-McIntyre M, Caldwell C. State Medicaid and Children’s Health Insurance Programs’ perspective on CHIPRA core measures. Acad Pediatr. 2011;11(suppl 3):S89–S90.

      Palfrey J, Brei T. Children’s health care providers and health care quality measurement [commentary]. Acad Pediatr. 2011;11(suppl 3):S87–S88.

      Wells N, Partridge L. Families are key in improving quality. Acad Pediatr. 2011;11(suppl 3):S85–S86.

      Complementary activities under ARRA and ACA are noted when they will help extend the reach of CHIPRA, and additional analytic work is used to help set the stage for identifying additional priorities in children’s health care quality measurement. Further, under CHIPRA, the identification of the initial core set of measures for voluntary use by Medicaid and CHIP is just a beginning step toward improving quality measurement and outcomes for children. CHIPRA provides for a Pediatric Quality Measures Program (PQMP) to be established by January 1, 2011.

      Agency for Healthcare Research and Quality. Children’s Health Insurance Program Reauthorization Act (CHIPRA). CHIPRA Children’s Health Care Quality Measurement and Improvement Activities. Available at: http://www.ahrq.gov/chipra/pqmpfact.htm. Accessed January 17, 2011.

      The PQMP will work to improve and strengthen the initial core set, and develop new measures when needed. Topics for improvement and development will be identified by the Department of Health and Human Services (HHS) with input from the public as to priorities.
      Agency for Healthcare Research and Quality
      Priority Setting for the Children’s Health Insurance Program Reauthorization Act (CHIPRA) Pediatric Quality Measures Program.
      Improved core sets of children’s health care quality measures are to be posted annually, beginning January 1, 2013. The rationale for publishing this supplement is to make publicly available useful information about issues surrounding the initial core set, including limitations of the set itself and key concepts for moving forward toward improvement.

      The Initial, Recommended Core Set of Measures

      CHIPRA’s requirement for publishing an initial, recommended core set of children’s health care quality measures for voluntary use by state Medicaid and CHIP programs and the health plans and health care providers with which they engage presented a challenge in terms of timing and scope. CHIPRA required identification by January 1, 2010, of “the types of measures that, taken together, can be used to estimate the overall national quality of health care for children and to perform comparative analyses of pediatric care quality and racial, ethnic, and socioeconomic disparities in child health and health care for children.”

      US Congress. Public Law 111-3, Children’s Health Insurance Program Reauthorization Act of 2009. Available at: http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_public_laws&docid=f:publ003.111. Accessed March 24, 2010.

      The measures were to be evidence-based, understandable, based on measures currently in use, and balanced across health services types and settings, child age groups, and measure types (structure, process and outcomes), according to the legislation.

      US Congress. Public Law 111-3, Children’s Health Insurance Program Reauthorization Act of 2009. Available at: http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=111_cong_public_laws&docid=f:publ003.111. Accessed March 24, 2010.

      To facilitate voluntary implementation by as many state programs as possible, the director of the Centers for Medicaid and State Operations (CMSO) in the Centers for Medicare & Medicaid Services (CMS) strongly urged that the initial core set be both “parsimonious and grounded,” meaning relatively limited in number and otherwise feasible for implementation by states.

      Agency for Healthcare Research and Quality. Transcript: first meeting of the Subcommittee on Quality Measures for Children in Medicaid and Children’s Health Insurance Programs, July 22–23, 2009. Available at: http://www.ahrq.gov/chip/chipra/snac072209/sesstranscr.htm. Accessed March 24, 2010.

      As shown in Table 1, the initial 24 measures posted for public comment met many, but not all, of these tests. Measures cover clinical quality for preventive and treatment services and family experiences of care across all child age groups. Most of the measures are process of care indicators, consistent with health care quality measurement in general, with only 5 health outcome measures. The measures as a whole address areas where medical costs are high, consequences of poor quality are great, and/or there is substantial variation in performance and/or a high need among racial, ethnic, low-income, and special health care need populations of children.
      Table 1Summary of the Initial, Recommended Core Set’s Ability to Address CHIPRA Criteria and Their Relevance to CHIPRA Criteria for Measurement
      CHIPRA = Children’s Health Insurance Program Reauthorization Act (Public Law 111-3, February 4, 2009); NA = data to identify disparities are not available based on current use of the measure; SNAC = AHRQ National Advisory Council on Healthcare Research and Quality Subcommittee on Children’s Healthcare Quality Measures for Medicaid and CHIP.
      CHIPRA-Specified Measure TopicCHIPRA Criteria for Measurement
      Range of Child AgesRange of Health Care Delivery Settings and Care ProvidersIdentification of DisparitiesEvidence-Based usingOxford Centre for Evidence-Based Medicine Grade
      Using the Oxford Centre for Evidence-based Medicine grading system (http://www.cebm.net/?o=1116), available published evidence was reviewed and grades were assigned as follows. Grade A was assigned to a measure topic with consistent level 1 studies. Grade B was assigned to a measure topic with consistent level 2 or 3 studies or extrapolations from level 1 studies. Grade C was assigned to a measure topic with level 4 studies or extrapolations from level 2 or 3 studies. Grade D was assigned to a measure topic with level 5 evidence or troublingly inconsistent or inconclusive studies of any level. See Mangione-Smith and colleagues11 (this issue) for further explanation of the grading process.
      Structure, Process, or Outcome
      By RaceBy EthnicityBy Socioeconomic StatusBy Special Health Care Needs Status (SHCN)
      Prevention and health promotion (13 measures)AllAmbulatory, dentalLow birth weight measure onlyLow birth weight measure onlyNANA9 with Grade B 2 graded both B and D; 1 graded D; 1 not able to be graded12 process, 2 outcome
      Treatment and management of acute conditions (5 measures)AllAmbulatory, dental, emergency department (ED), inpatientNANANANA2 graded A; 2 graded B; 1 graded D4 process, 1 outcome
      Treatment and management of chronic conditions (4 measures)AllAmbulatory, ED, mental health careNANANAInherently SHCN1 graded B; 1 graded C; 2 graded D4 process
      Family experiences of care (1 measure)AllAmbulatoryNANANAYes
      The CAHPS Medicaid 4.0 measure of patient experiences of care recommended by the SNAC included the Children With Chronic Care (CCC) items.
      BOutcome
      Availability of services/access12 mos-19 yearsAmbulatoryNANANANANAOutcome
      Most integrated health care settingNo measures in the initial core set
      Duration of enrollment
      CHIPRA = Children’s Health Insurance Program Reauthorization Act (Public Law 111-3, February 4, 2009); NA = data to identify disparities are not available based on current use of the measure; SNAC = AHRQ National Advisory Council on Healthcare Research and Quality Subcommittee on Children’s Healthcare Quality Measures for Medicaid and CHIP.
      Using the Oxford Centre for Evidence-based Medicine grading system (http://www.cebm.net/?o=1116), available published evidence was reviewed and grades were assigned as follows. Grade A was assigned to a measure topic with consistent level 1 studies. Grade B was assigned to a measure topic with consistent level 2 or 3 studies or extrapolations from level 1 studies. Grade C was assigned to a measure topic with level 4 studies or extrapolations from level 2 or 3 studies. Grade D was assigned to a measure topic with level 5 evidence or troublingly inconsistent or inconclusive studies of any level. See Mangione-Smith and colleagues

      Mangione-Smith R, Schiff J, Dougherty D. Identifying children’s health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process. Academic Pediatrics. 2011;11(suppl 3):S11–S21.

      (this issue) for further explanation of the grading process.
      The CAHPS Medicaid 4.0 measure of patient experiences of care recommended by the SNAC included the Children With Chronic Care (CCC) items.

      The Special Issue

      The set of articles in this supplement includes a detailed description of how the identification of a parsimonious set of children’s health care quality measures for immediate use was accomplished by a Subcommittee on Children’s Healthcare Quality Measures for Medicaid and CHIP of the Agency for Healthcare Research and Quality’s (AHRQ) National Advisory Council on Healthcare Research and Quality (SNAC), in close collaboration with the CMS and a specially convened CHIPRA Federal Quality Workgroup. An open public process combined with an evidence-informed evaluation methodology identified a balanced, grounded and parsimonious core set of measures that should be feasible to implement on a widespread basis over time.

      Mangione-Smith R, Schiff J, Dougherty D. Identifying children’s health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process. Academic Pediatrics. 2011;11(suppl 3):S11–S21.

      To provide background information for the SNAC’s consideration of the importance of specific measurement topics (within the CHIPRA legislative framework), Bethell was commissioned to analyze data from the 2007 National Survey of Child Health on the prevalence and incidence of childhood chronic conditions, and certain aspects of health care quality. Her article, included in this special issue, finds that an estimated 43% of US children currently have at least 1 of 20 chronic conditions, not including overweight or obesity.

      Bethell C, Kogan M, Strickland B, et al. A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations. Acad Pediatr. 2011;11(suppl 3):S22–S33.

      Rates and severity of chronic conditions are higher among publicly insured children after controlling for other demographic and socioeconomic factors, and variations across States are substantial. Quality of care varied between children with public versus private insurance on all but 3 measures. Along with data from other sources,

      Agency for Healthcare Research and Quality. National Healthcare Quality and Disparities Reports. Available at: http://www.ahrq.gov/qual/measurix.htm. Accessed August 27, 2010.

      • Berdahl T.
      • Owens P.
      • Dougherty D.
      • et al.
      Annual report on health care for children and youth in the United States: racial/ethnic and socioeconomic disparities in children’s health care quality.
      Bethell’s analysis can provide further guidance as measure improvement efforts proceed. Hess and deLone’s analysis of recent survey data provides a compelling case that CHIPRA’s quality provisions come at an opportune time for State Medicaid and CHIP programs. These programs report that health care quality improvement is relatively high on their list of priorities and that officials desire better quality measures.

      Hess C, deLone S. Medicaid and CHIP children’s health care quality measures: what states use and what they want. Acad Pediatr. 2011;11(suppl 3):S68–S76.

      Four additional articles commissioned during the process of identifying the initial core set assess the state of the measurement science for several topics identified as priorities for the legislation. Kenney and Pelletier’s article addresses measures of duration of enrollment and coverage in Medicaid and CHIP and confirm that having such measures is critical to understanding health care quality within the programs.

      Kenney G, Pelletier J. Monitoring duration of coverage in Medicaid and CHIP to assess program performance and quality. Acad Pediatr. 2011;11(suppl 3):S34–S41.

      Currently, over 25% of children are excluded from quality measurement in Medicaid and CHIP because of differing exclusions based on duration of enrollment. In her analysis, Bethell also found an almost 5-fold difference across states in gaps in insurance. Kenney and Pelletier’s article identifies several systems-level measures of duration with promising validity based on research studies. However, the SNAC concluded that the measures would need additional testing before being considered feasible in real-world Medicaid and CHIP programs, making this measure topic a high priority for future development. In addition, further development of duration measures is needed for use with specific quality measures.
      CHIPRA also identified measures of availability of services as a high priority for the core set. Availability of services for children enrolled in Medicaid has been of concern since the program began; having valid measures of availability would complement current measures of realized access (eg, number of members who had at least one visit with a primary care provider annually

      Agency for Healthcare Research and Quality. Table 1. Initial, recommended set of children’s health care quality measures. Available at: http://www.ahrq.gov/chipra/corebackground/corebacktab.htm. Accessed January 17, 2011.

      ; Table 1) given that lack of realized access can have multiple determinants other than whether services actually exist (eg, parental attitudes towards need for care). Kuhlthau’s article

      Kuhlthau K. Measures of availability of health care services for children. Acad Pediatr. 2011;11(suppl 3):S42–S48.

      identifies several measures of availability that can be built upon in the future (eg, geographic accessibility, provider willingness to accept insurance type). However, the article suggests that the subfield of quality measurement development for availability is likely not as far along as that for other topics. For example, only several subspecialties have been subject to measure development, and almost all the work has occurred in a research rather than measure development context.
      • Simpson L.
      • Dougherty D.
      • Krause D.
      • et al.
      Measuring children’s health care quality.
      CHIPRA also called for measures of the “most integrated health care setting” for children. In another article commissioned for use by SNAC, Sternberg and colleagues focused on the medical home as an exemplar of integration and examined the validity and feasibility of measures of “medical homeness.”

      Sternberg S, Co J, Homer C. Review of quality measures of the most integrated health care settings for children and the need for improved measures: recommendations for initial core measurement set for CHIPRA. Acad Pediatr. 2011;11(suppl 3):S49–S58.

      The article recommends several promising approaches to measuring this concept using existing surveys (eg, Consumer Assessment of Healthcare Providers and Systems [CAHPS®] and the National Surveys of Child Health) and structural approaches to measurement (eg, National Committee for Quality Assurance

      National Committee for Quality Assurance. PPC-PCMH publications. NCQA publications and products. Available at: http://www.ncqa.org/tabid/629/Default.aspx. Accessed January 17, 2011.

      ). However, none of the recommended measures had been validated for assessing medical homeness at the time the article was initially prepared. Since then, there has been more attention to assessing relationships between medical homeness and desirable child health outcomes, which could improve the possibility of including a medical home measure in one of the improved core sets.
      • Stevens G.
      • Pickering T.
      • Laqui S.
      Relationship of medical home quality with school engagement and after-school participation among children with asthma.
      • Stevens G.
      • Pickering T.
      • Seid M.
      • Tsai K.
      Disparities in the national prevalence of a quality medical home for children with asthma.
      • Raphael J.
      • Zhang Y.
      • Liu H.
      • et al.
      Association of medical home care and disparities in emergency care utilization among children with special health care needs.
      In addition, a broader concept of integration, the pediatric accountable care organization, was included in the ACA and will be tested in demonstration projects.
      • Shortell S.
      • Casalino L.
      • Fisher E.
      Implementing Accountable Care Organizations. Berkeley, Calif: Berkeley Center on Health Economic & Family Security.
      Developing and comparing measures of both the medical home and the pediatric accountable care organization could be a high priority for the CHIPRA PQMP.
      Although SNAC was able to respond to the CHIPRA call for a measure of family experiences of care by recommending the CAHPS Medicaid 4.0 for children with chronic illness for all children, Co and colleagues point out that work is still needed on measurement of inpatient experiences for children using mental and behavioral health services and of experiences of care at the clinician-group level.

      Co J, Sternberg S, Homer C. Measuring patient and family experiences of health care for children. Acad Pediatr. 2011;11(suppl 3):S59–S67.

      Wells and Partridge point out additional concepts for further development and testing within the current family experiences of care measure sets (eg, resolution of differences of opinions between providers and families; direct measurement of need for language interpretation).

      Wells N, Partridge L. Families are key in improving quality. Acad Pediatr. 2011;11(suppl 3):S85–S86.

      Despite the disappointment of not being able to identify several of the measures identified in the CHIPRA framework, several of the commentaries from key stakeholders recognize that the process undertaken in 2009, including the commissioned articles, represented a good beginning toward improved measurement and improved children’s health care quality. All commenters point out the need to go beyond mere measurement. Perspectives from Wells and Partridge

      Wells N, Partridge L. Families are key in improving quality. Acad Pediatr. 2011;11(suppl 3):S85–S86.

      and from Palfrey and Brei

      Palfrey J, Brei T. Children’s health care providers and health care quality measurement [commentary]. Acad Pediatr. 2011;11(suppl 3):S87–S88.

      and their colleagues also identified a need to educate both patients and providers about the CHIPRA core set and for HHS to work harder to engage these key stakeholders in both using and improving the measure sets. As Wells and Partridge point out, families and child patients have to be ready to use the data from the core sets to demand better care. Provider and patient engagement is a key focus of the Pediatric Quality Measurement Program.

      Agency for Healthcare Research and Quality. CHIPRA Pediatric Healthcare Quality Measures Program Centers of Excellence (U18). Funding opportunity announcements. Available at: http://grants.nih.gov/grants/guide/rfa-files/RFA-HS-11-001.html. Accessed January 17, 2011.

      Palfrey and Brei also note the potential for an evidence-based core set to improve pay-for-performance approaches to pediatric quality improvement. Greene-McIntyre and Caldwell emphasize the need for federal collaboration to avoid introducing multiple measure sets from different agencies.

      Greene-McIntyre M, Caldwell C. State Medicaid and Children’s Health Insurance Programs’ perspective on CHIPRA core measures. Acad Pediatr. 2011;11(suppl 3):S89–S90.

      Dougherty and Clancy note the contribution of CHIPRA’S focus on measurement and improvement to the potential for transforming children’s health care and health, at the same time suggesting that more work under other umbrellas may be needed to enhance the evidence base for measurement and improvement.

      Dougherty D, Clancy C. Transforming children’s health care quality and outcomes—a not-so-random non-linear walk across the translational continuum. Acad Pediatr. 2011;11(suppl 3):S91–S94.

      Finally, Fairbrother and Simpson make recommendations related to States’ needs for infrastructure and technical assistance and to the federal government in the context of new quality and coverage initiatives across the entire US population.

      Fairbrother G, Simpson L. Measuring and reporting quality of health care for children: CHIPRA and beyond. Acad Pediatr. 2011;11(suppl 3):S77–S84.

      The remainder of this introductory piece focuses on setting priorities for measurement.

      Priorities for Future Measurement

      Although the core set is a good start, considerable work is still needed to improve the initial core set and to develop evidence-based, feasible measures in areas specified by CHIPRA. Some of the missing topics are addressed in the special issue.

      Co J, Sternberg S, Homer C. Measuring patient and family experiences of health care for children. Acad Pediatr. 2011;11(suppl 3):S59–S67.

      Kenney G, Pelletier J. Monitoring duration of coverage in Medicaid and CHIP to assess program performance and quality. Acad Pediatr. 2011;11(suppl 3):S34–S41.

      Kuhlthau K. Measures of availability of health care services for children. Acad Pediatr. 2011;11(suppl 3):S42–S48.

      Sternberg S, Co J, Homer C. Review of quality measures of the most integrated health care settings for children and the need for improved measures: recommendations for initial core measurement set for CHIPRA. Acad Pediatr. 2011;11(suppl 3):S49–S58.

      In addition, our and the SNAC’s experience during the effort to identify the initial core set using CHIPRA criteria led to identification of additional potential priorities for measure development. Some of these priorities can be accomplished through the PQMP and others may require effort from elsewhere. Certainly, States working under the CHIPRA CMS State Quality Demonstration Projects initiative will make a contribution and have their measures considered for the improved core measure sets. These measures will implicitly reflect State priorities for measure development.
      Here we focus on 3 topical areas identified by the SNAC as potential priorities (inpatient and specialty care and health outcomes), on inequities in health, and on methodological issues uncovered during the SNAC process. We note why it may be important to focus on these topics, using standard criteria for assessing importance of a topic for measurement, ie, incidence, prevalence, costs and other burdens to the patient, family, and/or society.

      Inpatient Care

      Children ages 0–17 incurred $89.5 billion in inpatient hospital costs in 2007, over half of which was expected to be paid by public insurance.

      Agency for Healthcare Research and Quality. National estimates on use of hospitals by children from the HCUP Kids’ Inpatient Database (KID). Statistics are limited to 0–17 year olds. HCUPNet KID. Available at: http://hcupnet.ahrq.gov/HCUPnet.jsp?Id=A3ACBAAFD0CFE190&Form=MAINSEL&JS=Y&Action=%3E%3ENext%3E%3E&_MAINSEL=For%20Children%20Only. Accessed March 22, 2010.

      Although children older than infancy are less likely than adults to be hospitalized, quality of inpatient care can have a significant impact on children’s mortality, morbidity, and costs.
      • Miller M.
      • Zhan C.
      Pediatric patient safety in hospitals: a national picture in 2000.
      • Camp M.
      • Chang D.
      • Zhang Y.
      • et al.
      The Agency for Healthcare Research and Quality (AHRQ) pediatric quality indicators (PDIs): accidental puncture or laceration during surgery in children.
      • Simon T.
      • Berry J.
      • Feudtner C.
      • et al.
      Children with complex chronic conditions in inpatient hospital settings in the United States.
      CHIPRA called for a balanced set of measures across providers and settings. However, the only inpatient quality measure meeting the criteria for validity, feasibility, and importance used by the SNAC for the initial core set was the US Centers for Disease Control and Prevention’s (CDC) measure for central-line associated blood stream infection (CLABSI) in pediatric and neonatal intensive care units (PICU and NICU). Measuring CLABSI in PICUs and NICUs is very important because infection puts these most vulnerable children at great risk of death. Further, CLABSI is not inevitable, and evidence-based approaches exist to reducing its incidence and sequelae.
      • Miller M.
      • Griswold M.
      • Harris J.
      • et al.
      Decreasing PICU catheter-associated bloodstream infections: NACHRI’s quality transformation efforts.
      Nonetheless, this patient safety measure represents only one facet of inpatient care and covers relatively few children, and more inpatient measures are needed. In order to select from among possible topics to choose priorities within inpatient care, potential measure developers might consider examining leading causes and costs of child hospitalization, for example from the AHRQ Healthcare Cost and Utilization Project (HCUP) databases or the CDC’s National Hospital Discharge Survey.

      Agency for Healthcare Research and Quality. Healthcare Cost & Utilization Project (HCUP). Available at: http://www.ahrq.gov/data/hcup/. Accessed February 18, 2011.

      Centers for Disease Control and Prevention. National Hospital Discharge Survey. NCHS home surveys and data collection systems national health care surveys, December 13, 2010. Available at: http://www.cdc.gov/nchs/nhds.htm. Accessed February 18, 2011.

      As shown in Table 2, the most costly inpatient conditions are found in neonates, particularly newborns experiencing health problems. Beyond the neonatal period, the most costly inpatient conditions within the top 25 diagnostic categories are bronchitis and asthma, simple pneumonia and pleurisy, tracheotomy, other cardiothoracic procedures, and craniotomy. Some of these are costly because the number of children admitted is relatively large; others have low admission rates but high costs per admission.
      Table 2Top 25 Diagnosis-Related Groups, Children Ages 0–17, Ranked by Aggregate Charges, Medicaid as Expected Payer, and Inpatient Hospital Stays, 2006
      RankDiagnosis-Related GroupNameTotal No. of DischargesAggregate Charges, US$ (“National Bill”)
      Aggregate charges or the “national bill” is the sum of all charges for all hospital stays in the United States. When a case was missing information on charges, a value was imputed by taking the mean charges for all discharges of the same Diagnosis-Related Group (DRG) with nonmissing charges. Less than 2% of cases are missing charges in Healthcare Cost and Utilization Project (HCUP) data. Because of how missing charges are imputed, simple calculation of number of discharges × mean charge will not always equal the aggregate charges shown in HCUPNet. For the calculation of charges, if length of stay was over 365 days or total charges were over $5 million, the record was dropped from the Nationwide Inpatient Sample, and if length of stay was missing, total charges were set to missing.
      1386Extreme immaturity or respiratory distress syndrome, neonate41 1716 138 010 716
      2391Normal newborn1 263 7472 782 436 988
      3387Prematurity with major problems35 4962 245 093 329
      4389Full term neonate with major problems82 6221 951 545 387
      5385Neonates, died or transferred to another acute care facility41 3651 688 920 177
      698Bronchitis and asthma age 0–17154 6811 440 949 727
      7390Neonate with other significant problems264 4871 280 358 420
      8388Prematurity without major problems84 9281 245 205 194
      991Simple pneumonia and pleurisy age 0–1781 821904 913 303
      10541Tracheotomy with mechanical ventilation 96+ hours or principal diagnoses except face, mouth and neck diagnoses with major operating room procedure1 997762 413 256
      11108Other cardiothoracic procedures5 112738 387 106
      123Craniotomy age 0–179 554665 973 288
      13430Psychoses37 209620 137 318
      14475Respiratory system diagnosis with ventilator support6 522596 182 206
      15184Esophagitis, gastroenteritis and miscellaneous digestive disorders age 0–1767 373573 745 831
      16373Vaginal delivery without complicating diagnoses71 167561 992 475
      1726Seizure and headache age 0–1733 493421 896 475
      18110Major cardiovascular procedures with CC2 494408 694 984
      19298Nutritional and miscellaneous metabolic disorders age 0–1747 388398 306 152
      20279Cellulitis age 0–1732 524314 411 091
      21156Stomach, esophageal, and duodenal procedures age 0–1710 250309 979 344
      22542Tracheotomy with mechanical ventilation 96+ hours or principal diagnoses except face, mouth and neck diagnoses without major operating room procedure981293 736 656
      23431Childhood mental disorders14 011281 696 261
      24422Viral illness and fever of unknown origin age 0–1731 702271 676 224
      25417Septicemia age 0–178 744266 980 998
      Source: Kids Inpatient Database, 2006, HCUPNet analysis, March 21, 2010.
      Aggregate charges or the “national bill” is the sum of all charges for all hospital stays in the United States. When a case was missing information on charges, a value was imputed by taking the mean charges for all discharges of the same Diagnosis-Related Group (DRG) with nonmissing charges. Less than 2% of cases are missing charges in Healthcare Cost and Utilization Project (HCUP) data. Because of how missing charges are imputed, simple calculation of number of discharges × mean charge will not always equal the aggregate charges shown in HCUPNet. For the calculation of charges, if length of stay was over 365 days or total charges were over $5 million, the record was dropped from the Nationwide Inpatient Sample, and if length of stay was missing, total charges were set to missing.
      Data on frequency and costs can be complemented by the increasing literature identifying quality problems in inpatient care, such as data on neonatal care quality,
      • Rogowski J.
      • Staiger D.
      • Horbar J.
      Variations in the quality of care for very-low-birthweight infants: implications for policy.
      variations in the extent to which proven and unproven therapies are used for common conditions (urinary tract infections, asthma, bronchiolitis, and gastroenteritis),
      • Conway P.
      • Edwards S.
      • Stucky E.
      • et al.
      Variations in management of common inpatient pediatric illnesses: hospitalists and community pediatricians.
      and other documented quality problems.
      • Markus A.R.
      • Rosenbaum S.
      The role of Medicaid in promoting access to high-quality, high-value maternity care.
      March of Dimes
      Toward Improving the Outcome of Pregnancy, III.
      • Rinke M.
      • Bundy D.
      • Shore A.
      • et al.
      Pediatric antidepressant medication errors in a national error reporting database.
      Investigation into quality problems can also be aided by examining patient and hospital characteristics associated with higher than average mortality or readmission rates. For example, an analysis performed by one of us (DD) of the Kids Inpatient Database using HCUPNet

      Agency for Healthcare Research and Quality. Healthcare Cost & Utilization Project (HCUP). Available at: http://www.ahrq.gov/data/hcup/. Accessed February 18, 2011.

      reveals that child inpatient mortality is higher for patients whose likely payer is uninsured, Medicare, or Medicaid than privately insured patients, in large hospitals, and in the South compared to other regions of the country. Differences between public and private insurance may reflect the fact that public sources cover many chronically ill children, but the other differences may point to quality problems that would benefit from more systematic and regular measurement. As noted by Co and colleagues, a child inpatient experience of care measure could address an important domain of quality across all inpatients.

      Specialty Care

      Pediatrics is typically thought of as solely a primary care discipline, but a recent analysis found that 20% of children’s visits to office-based physicians in the United States are to specialty providers, including obstetrician-gynecologists, medical specialists, and surgical specialists.
      • Kuhlthau K.
      • Nyman R.M.
      • Ferris T.G.
      • et al.
      Correlates of use of specialty care.
      Not surprisingly, specialist visit rates are more than twice as high for children with a chronic condition or disability (26%) as for children without such conditions or disabilities, but 10% of children without an identified special health care need also visited specialists.
      • Kuhlthau K.
      • Nyman R.M.
      • Ferris T.G.
      • et al.
      Correlates of use of specialty care.
      Thus, the quality of specialty care can have a substantial impact on children’s well-being. Although relatively little has been published on the costs of care for rarer conditions, available estimates suggest that cost is another reason for making specialty care an essential target of quality measurement and improvement (Table 3). Efforts to improve quality in selected subspecialty areas
      • Quinton H.
      • O’Connor G.
      for the Northern New England CV Cystic Fibrosis Consortium
      Current issues in quality improvement in cystic fibrosis.
      • Frei-Jones M.
      • Field J.
      • DeBaun M.
      Multi-model intervention and prospective implementation of standardized sickle cell pain admission orders reduces 30-day readmission rate.
      • Frei-Jones M.
      • Field J.
      • DeBaun M.
      Risk factors for hospital readmission within 30 days: a new quality measure for children with sickle cell disease.
      • Beekman R.
      • Lannon C.
      The National Pediatric Cardiology Quality Improvement Collaborative.
      • Crandall W.
      • Kappelman M.
      • Colletti R.
      • et al.
      ImproveCareNow: the development of a pediatric inflammatory bowel disease improvement network.
      suggest the breadth and depth of quality problems in specialty care; these efforts can provide building blocks for further progress in measure development for accountability by State programs and nationally. For example, performance measures are being used across cystic fibrosis centers to assess quality.
      • Quinton H.
      • O’Connor G.
      for the Northern New England CV Cystic Fibrosis Consortium
      Current issues in quality improvement in cystic fibrosis.
      The American College of Surgeons National Surgical Quality Improvement Program recently initiated assessment of pediatric surgical outcomes across multiple institutions, finding a rate of unadjusted complications of from 6.8% to 10.2%.
      • Raval M.
      • Dillon P.
      • Bruny J.
      • et al.
      Pediatric American College of Surgeons National Surgical Quality Improvement Program: feasibility of a novel, prospective assessment of surgical outcomes.
      Challenges to identification and development of evidence-based specialty-focused health care quality measures include the paucity of evidence for much of subspecialty care

      Dougherty D, Clancy C. Transforming children’s health care quality and outcomes—a not-so-random non-linear walk across the translational continuum. Acad Pediatr. 2011;11(suppl 3):S91–S94.

      and relatively small numbers of children with specific conditions and receiving specific services.
      • Forrest C.
      • Simpson L.
      • Clancy C.
      Child health services research: challenges and opportunities.
      Table 3Selected Costly Conditions Requiring Specialty Care, Prevalence of Condition, Inpatient Costs, Overall Cost of Illness
      Care TypePrevalence of Condition or Annual Rate of Health Care EncountersNumber of Medicaid Inpatient Discharges (% of all Discharges Ages 0–17) and Aggregate Charges,
      Aggregate charges or the “national bill” is the sum of all charges for all hospital stays in the United States. When a case was missing information on charges, a value was imputed by taking the mean charges for all discharges of the same Diagnosis-Related Group (DRG) with nonmissing charges. Less than 2% of cases are missing charges in Healthcare Cost and Utilization Project (HCUP) data. Because of how missing charges are imputed, simple calculation of number of discharges X mean charge will not always equal the aggregate charges shown in HCUPNet. For the calculation of charges, if length of stay was over 365 days or total charges were over $5 million, the record was dropped from the Nationwide Inpatient Study, and if length of stay was missing, total charges were set to missing.
      2006
      Discharges and aggregate costs are for principal diagnoses only, using the CCS codes in the 2006 Kids Inpatient Database (KID).
      Overall Cost of Illness Estimate
      Sickle cell disease1/500 births to African Americans

      Centers for Disease Control and Prevention. Sickle cell disease. Available at: http://www.cdc.gov/ncbddd/sicklecell/hcp_data.htm. Accessed March 22, 2010.

      13 032 (65.6%)

      $197 054 913
      $11 075 (median annual)
      • Mvundura M.
      • Amendah D.
      • Kavanagh P.L.
      • et al.
      Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States.
      Cystic fibrosis15 000 children

      Cystic Fibrosis Foundation. About cystic fibrosis. Available at: http://www.cff.org/AboutCF. Accessed March 22, 2010.

      2 269 (42%)

      $116 546 547
      $43 000/year (mean medical expenditures—private only)
      • Ouyang L.
      • Grosse S.D.
      • Amendah D.D.
      • Schechter M.S.
      Healthcare expenditures for privately insured people with cystic fibrosis.
      Down syndrome, ages 0–41/800 newborns/year

      March of Dimes. Working together for stronger, healthier babies. Birth defects. Available at: http://www.marchofdimes.com/professionals/14332_1214.asp?gclid=COG6vMzdtqACFSJ25Qod5QLtTw#head1. Acccessed February 21, 2011.

      NA$36 384/year (mean medical expenditures–ages 0–4, privately insured only)
      • Boulet S.L.
      • Molinari N.A.
      • Grosse S.D.
      • et al.
      Health care expenditures for infants and young children with Down syndrome in a privately insured population.
      Spina bifida1/2500 newborns/year

      Centers for Disease Control and Prevention. Spina bifida. Available at: http://www.cdc.gov/ncbddd/birthdefects/SpinaBifida.htm#WhatWeKnow. Accessed February 21, 2011.

      NA$49 602 (age <1); $15 242 (ages 1–17); mean expenditures—privately insured only)
      • Ouyang L.
      • Grosse S.D.
      • Armour B.S.
      • Waitzman N.J.
      Health care expenditures of children and adults with spina bifida in a privately insured US population.
      Autism spectrum disorders (ASDs)About 1 in 110

      8-year old children in multiple areas of the United States have ASDs

      Centers for Disease Control and Prevention. Public health genomics. Genomics and health autism. Available at: http://www.cdc.gov/genomics/resources/diseases/autism.htm. Accessed February 21, 2011.

      NA$6830 (mean); $3600 (median)/year—privately insured only-with diagnosis in 2003
      • Shimabukuro T.T.
      • Grosse S.D.
      • Rice C.
      Medical expenditures for children with an autism spectrum disorder in a privately insured population.
      Oral-facial cleft palateNANA$22 642 compared to $3900 for an unaffected child
      Outcome measures included average cost per child for medical, inpatient, outpatient, dental, well-child care, mental health, and home health.
      (North Carolina Medicaid 1995–2002
      • Cassell C.H.
      • Robert Meyer
      • Daniels J.
      Health care expenditures among Medicaid enrolled children with and without orofacial clefts in North Carolina, 1995–2002.
      data); $36 million in inpatient expenditures, $85 million in inpatient costs, 2006
      HCUPNet analysis using KID 2006, for DRG 52 cleft lip and palate repair, March 13, 2010.
      Aggregate charges or the “national bill” is the sum of all charges for all hospital stays in the United States. When a case was missing information on charges, a value was imputed by taking the mean charges for all discharges of the same Diagnosis-Related Group (DRG) with nonmissing charges. Less than 2% of cases are missing charges in Healthcare Cost and Utilization Project (HCUP) data. Because of how missing charges are imputed, simple calculation of number of discharges X mean charge will not always equal the aggregate charges shown in HCUPNet. For the calculation of charges, if length of stay was over 365 days or total charges were over $5 million, the record was dropped from the Nationwide Inpatient Study, and if length of stay was missing, total charges were set to missing.
      Discharges and aggregate costs are for principal diagnoses only, using the CCS codes in the 2006 Kids Inpatient Database (KID).
      Outcome measures included average cost per child for medical, inpatient, outpatient, dental, well-child care, mental health, and home health.
      § HCUPNet analysis using KID 2006, for DRG 52 cleft lip and palate repair, March 13, 2010.

      Health Outcome Measures

      Patient health is the ultimate indicator of high quality health care. High-quality infrastructure and care processes are precursors to improved or optimal patient outcomes, such as a healthy full-term birth, age-appropriate body mass index, recovery from acute illness, and ability to live as well as possible with chronic illness.
      • Donabedian A.
      Evaluating the quality of medical care.
      One dissatisfaction with the process to identify an initial core set of measures was the relative paucity of meaningful child health outcome measures to measure health care quality (Table 1). Although some intermediate outcome measures are used to assess quality relatively routinely (eg, HbA1c levels reported in the National Healthcare Quality Reports

      Agency for Healthcare Research and Quality. National estimates on use of hospitals by children from the HCUP Kids’ Inpatient Database (KID). Statistics are limited to 0–17 year olds. HCUPNet KID. Available at: http://hcupnet.ahrq.gov/HCUPnet.jsp?Id=A3ACBAAFD0CFE190&Form=MAINSEL&JS=Y&Action=%3E%3ENext%3E%3E&_MAINSEL=For%20Children%20Only. Accessed March 22, 2010.

      ), few entities hold any organizations responsible for individual or child population health status (eg, number of births to teens,

      Health Resources and Services Administration Maternal and Child Health Bureau. National performance measures. Available at: https://perfdata.hrsa.gov/MCHB/TVISReports/MeasurementData/StandardNationalMeasureIndicatorSearch.aspx?MeasureType=Performance&YearType=MostRecent. Accessed March 21, 2010.

      child- and family-rated quality of life). However, proxies such as emergency department and inpatient utilization for conditions considered to be ambulatory care sensitive are used, with 2 included in the initial core set (Table 1). Similarly, patient and family experiences of care are a form of outcome measure shown to be related to health.

      Co J, Sternberg S, Homer C. Measuring patient and family experiences of health care for children. Acad Pediatr. 2011;11(suppl 3):S59–S67.

      In moving forward to identify or develop more direct health outcome measures relevant to child health care quality, those in the field should be aware of the special challenges inherent in using outcomes to measure health care quality.
      • Lohr K.
      Outcome measurement: concepts and questions.
      These challenges are similar to those in adult medicine, although there may be greater opportunities for measuring intermediate markers of disease status in adult than pediatric care (eg, blood pressure, cholesterol). Recent research strongly suggests causal linkages between variations in health care quality and changes in health-related quality of life, some using well-validated measures such as the PedsQL; further investigation and testing of health-related quality of life measures may be warranted under the PQMP.
      • Seid M.
      • Varni J.
      • Cummings L.
      • Schonlau M.
      The impact of realized access to care on health-related quality of life: a two-year prospective cohort study of children in the California State Children’s Health Insurance Program.
      • Lozano P.
      • Finkelstein J.
      • Carey V.
      • et al.
      A multisite randomized trial of the effects of physician education and organizational change in chronic-asthma care: health outcomes of the Pediatric Asthma Care Patient Outcomes Research Team II Study.
      • Hays R.
      • Valentine J.
      • Haynes G.
      • et al.
      The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life.

      Focus on Inequities in Health

      Given the persistence of poorer quality for racial, ethnic and low SES children, and the CHIPRA emphasis on identifying disparities in quality, an additional approach to setting priorities for health care quality measurement development and improvement might focus on known inequities in health. For example, a literature review by Berry and colleagues identified Black children as having higher rates of cerebral palsy and HIV/AIDs, and surviving less often with Down syndrome, type 1 diabetes, and traumatic brain injury when compared with white children.
      • Berry J.
      • Bloom S.
      • Foley S.
      • Palfrey J.
      Health inequity in children and youth with chronic health conditions.
      Hispanic children had higher rates of HIV/AIDS and depression, had poorer glycemic control with type 1 diabetes, and survived less often with acute leukemia compared with white children. Black children are exponentially more likely to have sickle cell disease or trait; improvements in the quality of treatment and management of sickle cell enhance the quality of care for Black children overall. Others have written compellingly about the need to address pediatric health disparities.
      • Oberg C.
      • Rinaldi M.
      Pediatric health disparities.
      • Flores G.
      Committee on Pediatric Research
      Technical report—racial and ethnic disparities in the health and health care of children.
      • Cheng T.
      • Dreyer B.
      • Jenkins R.
      Introduction: child health disparities and health literacy.
      Working backward from these differences in health conditions could help identify potential health care quality problems that could then be subject to routine measurement. For example, what might be the role of the health care delivery system in inequities in early deaths from leukemia among Hispanics?
      • Pui C.
      • Boyett J.
      • Hancock M.
      • et al.
      Outcome of treatment for childhood cancer in black as compared to white children.
      Have quality problems been identified for children with sickle cell disease?
      • Quinn C.
      A question of quality in sickle cell disease.
      Similar strategies might be undertaken for other groups that are likely to be underrepresented for quality measure development, such as adolescents.
      • Mulye T.
      • Park M.
      • Nelson C.
      • et al.
      Trends in adolescent and young adult health in the United States.

      Methodological Priorities

      Setting priorities for future measurement by clinical topic or setting will not be sufficient to meet the needs of children and the directives of the CHIPRA legislation that measures be applicable across all Medicaid and CHIP program types (eg, managed care, fee-for-service) and able to identify disparities by race, ethnicity, socioeconomic status, and special health care need. The effort to identify initial core measures using CHIPRA requirements identified a number of critical methodological issues for future measure enhancement and development, including 1) the need for measure specifications that can assess quality across payers, providers, programs, and patient populations, and 2) the need to ensure that data needed to analyze racial, ethnic, socioeconomic, and special health care need disparities are collected in a consistent way (beyond disparities identified by a focus on inequities in health outcomes, as noted above).

      Agency for Healthcare Research and Quality. Improvements to the measure set are needed to meet legislative requirements. Background report for the request for public comment on initial, recommended core set of children’s healthcare quality measures for voluntary use by Medicaid and CHIP programs, December 29, 2009. Available at: http://www.ahrq.gov/chipra/corebackground/coreback3.htm#improve. Accessed January 14, 2011.

      Meeting a third methodological challenge—to make the best use of emerging health information technologies for quality measurement—is crucial for enhancing the feasibility of the core measures. A fourth is the need to measure the quality of health care services beyond the traditional medical care delivery system (eg, hospitals and physicians/nurse offices) into and across specialized therapeutic services such as mental health, nutrition, physical therapy, and other rehabilitative services (eg, speech). Addressing these issues is likely to be a high priority for the CHIPRA Pediatric Quality Measurement Program (PQMP). Fortunately, the PQMP can build on recent and ongoing efforts in some of these areas (eg, efforts underway to identify racial and ethnic disparities; over a decade of experience with survey-based and other measures to identify children with special health care needs; and use of electronic health records to measure quality).

      Limitations

      The work undertaken to identify the initial core set of measures and the approach taken in this overview article to suggest ways to identify priorities has limitations. Limitations of the process to identify initial core measures are addressed in the article by Mangione-Smith and colleagues in this special issue; these were mostly driven by the short time available to complete the process.

      Mangione-Smith R, Schiff J, Dougherty D. Identifying children’s health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process. Academic Pediatrics. 2011;11(suppl 3):S11–S21.

      For example, more time and resources might have improved the extent to which we were able to gather evidence to assess the underlying validity for a greater variety of CHIPRA topics, and to gather information on the range of measures available for consideration by the SNAC. However, in some respects, the short time frame was advantageous because it forced the SNAC to complete the process where previous attempts had struggled.
      • Partridge L.
      Review of Access and Quality of Care in SCHIP Using Standardized National Performance Measures.
      We have proposed some ideas for setting priorities for future measurement work, but other approaches to setting priorities within children’s health and health care may be more fruitful. For example, the NQF relied on Bethell’s identification of child chronic conditions in combination with a set of priorities previously established by the National Priorities Project to advise HHS on priorities for future child health care measure development and endorsement.

      National Quality Forum. National Quality Forum releases measure development and endorsement agenda: prioritized list of measure gaps. January 14, 2011. Available at: http://qualityforum.org/News_And_Resources/Press_Releases/2011/National_Quality_Forum_Releases_Measure_Development_and_Endorsement_Agenda__Prioritized_List_of_Measure_Gaps.aspx. Accessed January 17, 2011.

      The IOM recently started with a previous IOM framework and the NPP priorities and added to them the areas of access and health systems infrastructure capabilities, but they also suggested a more quantitative and systematic approach as an addendum to their report on the future of quality measurement reporting.

      Institute of Medicine Committee on future directions for the National Healthcare Quality and Disparities Reports. Future Directions for the National Healthcare Quality and Disparities Reports. Washington, DC: IOM; April 2010. Available at: http://www.iom.edu/Reports/2010/Future-Directions-for-the-National-Healthcare-Quality-and-Disparities-Reports.aspx. Accessed February 21, 2011.

      Having a standardized and comprehensive approach to priority setting often requires standardized and comprehensive data across a number of domains, a situation that rarely exists. One advantage that CHIPRA provides the child health field is the opportunity to set priorities within child health alone. In many approaches to priority setting, children may be disadvantaged relative to adults or subsets of adults because they comprise only a quarter of the population, incur lower health care expenditures and are less likely as a group to experience costly chronic conditions.

      Conclusion

      We consider the identification of the core set to be a significant initial accomplishment under CHIPRA. Valid, feasible, and important measures for most legislative topics were identified. With sufficient attention to making the measures feasible for use across Medicaid and CHIP programs, and with technical assistance, voluntary use should be facilitated. This achievement builds on the efforts of many who have toiled in the children’s health care quality measurement and improvement fields for decades. However, the initial core set is but one step on the road toward improved quality for children. The identification of future challenges and opportunities for measure enhancement was a side benefit of the CHIPRA core measure identification process and has been helpful in setting a future pediatric quality research agenda.
      Improving children’s health care for the benefit of children’s and adolescents’ health and well-being has both short- and long-term implications for the children, their families, and society at large. Although quality measurement is not enough, achieving improvement in children’s health is inextricably linked to measurement of the quality of health care that is delivered. Commentaries in this supplement provide additional detail on how critical it is to go beyond measurement to continuous quality improvement.

      Mann C. A new era for State Medicaid and children’s health insurance programs [commentary]. Acad Pediatr. 2011;11(suppl 3):S95–S96.

      Fairbrother G, Simpson L. Measuring and reporting quality of health care for children: CHIPRA and beyond. Acad Pediatr. 2011;11(suppl 3):S77–S84.

      We are fortunate as a nation that cares for its children that CHIPRA provides a road map for linking future pediatric quality measurement and improvement efforts.

      Acknowledgment

      We thank Maushami DeSoto, Marsha Jenakovich, and Christopher Gaines for the research assistance they provided.

      References

      1. Institute of Medicine Committee on future directions for the National Healthcare Quality and Disparities Reports. Future Directions for the National Healthcare Quality and Disparities Reports. Washington, DC: IOM; April 2010. Available at: http://www.iom.edu/Reports/2010/Future-Directions-for-the-National-Healthcare-Quality-and-Disparities-Reports.aspx. Accessed February 21, 2011.

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