Road to the Future: Priorities for Child Health Services Research.

BACKGROUND: Prior health services research (HSR) agendas for children have been published, but major ones are now over 15 years old and do not reflect augmented understanding of the drivers and determinants of children's health; recent changes in the organization, financing, and delivery of health care; a growing emphasis on population health; and major demographic shifts in the population. A policy-relevant research agenda that integrates knowledge gained over the past 2 decades is essential to guide future child HSR (CHSR). We sought to develop and disseminate a robust, domestically focused, policy-oriented CHSR agenda. METHODS: The new CHSR agenda was developed through a series of consultations with leaders in CHSR and related fields. After each round of consultation, the authors synthesized the previous experts' guidance to help inform subsequent discussions. The multistep process in generation of the agenda included identification of major policy-relevant research domains and specification of high-value research questions for each domain. Stakeholders represented in the discussions included those with expertise in child and family advocacy, adult health, population health, community development, racial and ethnic disparities, women's health, health economics, and government research funders and programs. RESULTS: In total, 180 individuals were consulted in developing the research agenda. Six priority domains were identified for future research, including both enduring and emerging emphases: 1) framing children's health issues so that they are compelling to policy-makers; 2) addressing poverty and other social determinants of child health and wellbeing; 3) promoting equity in population health and health care; 4) preventing, diagnosing, and treating high priority health conditions in children; 5) strengthening performance of the health care system; and 6) enhancing the CHSR enterprise. Within these 6 domains, 40 specific topics were identified as the most pertinent for future research. Three overarching and crosscutting themes that affect research across the domains were also noted: the need for syntheses to build on the current, and sometimes extensive, evidence base to avoid duplication; the interrelated nature of the domains, which could lead to synergies in research; and the need for multidisciplinary collaborations in conducting research because research studies will look beyond the health sector. CONCLUSIONS: The priorities presented in the agenda are policy-oriented and include a greater emphasis on how findings are framed and communicated to support action. We expect that the agenda will be useful for immediate uptake by investigators and research funders.

State challenges to child health quality measure reporting and recommendations for improvement.

OBJECTIVE: The Children's Health Insurance Program (CHIP) was re-authorized in 2009, ushering in an unprecedented focus on children's health care quality one of which includes identifying a core set of performance measures for voluntary reporting by states' Medicaid/CHIP programs. However, there is a wide variation in the quantity and quality of measures states chose to report to the Center's for Medicare & Medicaid Services (CMS). The objective of this study is to assess reporting barriers and to identify potential opportunities for improvement. METHODS: From 2013 to 2014 a questionnaire developed in coordination with CMS and the Agency for Healthcare Research and Quality (AHRQ) was sent to state Medicaid and CHIP officials to assess barriers to child health quality reporting for Federal Fiscal Year 2012. States were categorized as high, medium, or low reporting for comparative analysis. RESULTS: Twenty-five of the 50 states and the District of Columbia agreed to participate in the study and completed the questionnaire. States placed a high priority on children's health care quality reporting (4.2 of 5 point Likert Scale, SD 0.99) and 96% plan to use measurement results to further improve their quality initiatives. However, low reporting states believed they had inadequate staffing and that data collection and extraction was too time-consuming than high reporting states. CONCLUSION: Based on state responses, possible solutions to improve reporting includes funding and staff support, refining the technical assistance provided, and creating venues for state-to-state interaction. Realistic and tangible improvements are within reach and opportunities for CMS and states to collaborate to improve child health care quality.

A framework for assessing outcomes from newborn screening: on the road to measuring its promise.

UNLABELLED: Newborn screening (NBS) is intended to identify congenital conditions prior to the onset of symptoms in order to provide early intervention that leads to improved outcomes. NBS is a public health success, providing reduction in mortality and improved developmental outcomes for screened conditions. However, it is less clear to what extent newborn screening achieves the long-term goals relating to improved health, growth, development and function. We propose a framework for assessing outcomes for the health and well-being of children identified through NBS programs. The framework proposed here, and this manuscript, were approved for publication by the Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). This framework can be applied to each screened condition within the Recommended Uniform Screening Panel (RUSP), recognizing that the data elements and measures will vary by condition. As an example, we applied the framework to sickle cell disease and phenylketonuria (PKU), two diverse conditions with different outcome measures and potential sources of data. Widespread and consistent application of this framework across state NBS and child health systems is envisioned as useful to standardize approaches to assessment of outcomes and for continuous improvement of the NBS and child health systems. SIGNIFICANCE: Successful interventions for newborn screening conditions have been a driving force for public health newborn screening for over fifty years. Organizing interventions and outcome measures into a standard framework to systematically assess outcomes has not yet come into practice. This paper presents a customizable outcomes framework for organizing measures for newborn screening condition-specific health outcomes, and an approach to identifying sources and challenges to populating those measures.

Advancing children's health care and outcomes through the pediatric quality measures program.

In 2009 Congress passed the Children's Health Insurance Program Reauthorization Act (CHIPRA), which presented an unprecedented opportunity to measure and improve health care quality and outcomes for children. The Agency for Healthcare Research and Quality, in partnership with the Centers for Medicare & Medicaid Services, has worked to fulfill a number of quality measurement provisions under CHIPRA, including establishing the Pediatric Quality Measures Program (PQMP). The PQMP was charged with establishing a publicly available portfolio of new and enhanced evidence-based pediatric quality measures for use by Medicaid/Children's Health Insurance Program and other public and private programs and to also provide opportunities to improve and strengthen the Child Core Set of quality measures. This article focuses on the PQMP and provides an overview of the program's goals and related activities, lessons learned, and future opportunities.

Systematic evidence-based quality measurement life-cycle approach to measure retirement in CHIPRA.

OBJECTIVE: In 2009, Centers for Medicare and Medicaid Services (CMS) publicly released an initial child core set (CCS) of health care quality measures for voluntary reporting by state Medicaid and Children's Health Insurance Program (CHIP) programs. CMS is responsible for implementing the reporting program and for updating the CCS annually. We assessed selected CCS measures for potential retirement. METHODS: We identified a 23-member external advisory group to provide relevant expertise. We worked with the group to identify 4 major criteria with multiple subcomponents for assessing the measures. We provided information corresponding to each criterion and subcriterion, using a variety of sources such as the 2009 Medicaid Analytic eXtract (MAX), state-level Medicaid and CHIP data submitted to the CMS, and summaries of published literature on clinical and quality improvement effectiveness related to the CCS topics. Using this information, the group: 1) used a modified Delphi process to score the measures in 2 anonymous scoring rounds (on a scale of 1 to 9 in each round); 2) voted on whether each measure should be retired; and 3) provided narrative explanations of their choices (which formed the basis of our qualitative findings). Recommendations were reviewed by CMS before promulgation to state programs. RESULTS: The Subcommittee of the National Advisory Council on Healthcare Research and Quality (SNAC) recommended that the 4 major criteria be importance, scientific acceptability, feasibility, and usability. The SNAC recommended 3 measures for retirement: access to primary care; testing for strep before recommending antibiotics for pharyngitis; and annual HbA1c testing of children with diabetes. Explanations for suggesting retirement of the measures included: views that the well-visit measures were a better measure of access than the primary care measure; a likely ceiling effect (pharyngitis); and the paucity of clinical evidence and low prevalence (both for HbA1c). CMS recommended that state Medicaid and CHIP programs retire 2 of the recommended measures from the CCS, but retained the access to primary care measure. CONCLUSIONS: Periodic reassessment of the value of health care quality measures can reduce reporting burden and allow measure users to focus on measures with higher likelihood of leading to improvements in quality of care and child health outcomes.

Child and adolescent health care quality and disparities: are we making progress?

OBJECTIVE: Children and adolescents are known to experience poor health care quality; some groups of children have poorer health care than others. We sought to examine trends over time in health care quality and disparities by race, Hispanic ethnicity, income, insurance, gender, rurality, and special health care needs. METHODS: Source data were extracted from the 2011 National Healthcare Quality Report (NHQR) and National Healthcare Disparities Report (NHDR) database, which contains aggregated data from many government and private sources for the years 2000 through 2009. The NHQR and NHDR approaches to calculating disparities and trends in quality and disparities were used. Within each quality measure with available data, results for demographic subgroups of children characterized by race/ethnicity, income, insurance, residence, special health care need, and gender were compared to those of a reference group to determine whether disparities existed and whether disparities had changed over time. RESULTS: Of 68 measures with data for calculating potential disparities, 50 showed disparities in quality for at least 1 comparison subgroup in the most recent year of data available, while 18 measures showed no such disparities. Of the 50 measures with current disparities, 39 measures had sufficient data to calculate trends. Among the 137 comparisons made within these 39 measures, there was no change in disparities over time for 126 comparisons, 3 comparisons worsened, and 8 comparisons improved. CONCLUSIONS: There was some progress in health care quality and reducing disparities in children's health care quality from 2000 to 2009; opportunities for targeting improvement strategies remain.

Pediatric health care quality measures: considerations for pharmacotherapy.

Measuring the quality use of medicines can be conceptualized as a mechanism for understanding appropriate use, underuse, overuse, or misuse. For pediatric pharmacotherapy, measuring the quality use of medicines requires awareness of the differences in health care between children and adults and the differences in the quality and quantity of science that supports evidence-based practice in pediatric health care compared with adult health care. Here we use the Pediatric Quality Measures Program that arose from the Children's Health Insurance Program Reauthorization Act in the United States to illustrate the challenges in developing quality measures of pediatric pharmacotherapy. The challenges are primarily twofold: (i) weak evidence base for the specific pharmacotherapy in children and (ii) limited data to calculate the measure. A weak evidence base must often be weighed against the importance of the topic if the quality measure is intended to address a known quality of care or public health problem. Limited data because of insufficient amount or inappropriate type will affect implementation of the measure and its eventual usefulness. Methods to meet these challenges often depend on the priorities of and the tools available to end users. Health information technology is emerging as a tool to improve quality measurement but presents additional challenges.

Assessing quality improvement in health care: theory for practice.

OBJECTIVES: To review the role of theory as a means to enhance the practice of quality improvement (QI) research and to propose a novel conceptual model focused on the operations of health care. METHODS: Conceptual model, informed by literature review. RESULTS: To optimize learning across QI studies requires the integration of small-scale theories (middle-range theories, theories of change) within the context of larger unifying theories. We propose that health care QI research would benefit from a theory that describes the operations of health care delivery, including the multiplicity of roles that interpersonal interactions play. The broadest constructs of the model are entry into the system, and assessment and management of the patient, with the subordinate operations of access; recognition, assessment, and diagnosis; and medical decision-making (developing a plan), coordination of care, execution of care, referral and reassessment, respectively. Interpersonal aspects of care recognize the patient/caregiver as a source of information, an individual in a cultural context, a complex human being, and a partner in their care. Impacts to any and all of these roles may impact the quality of care. CONCLUSIONS: Such a theory can promote opportunities for moving the field forward and organizing the planning and interpretation of comparable studies. The articulation of such a theory may simultaneously provide guidance for the QI researcher and an opportunity for refinement and improvement.

A framework for key considerations regarding point-of-care screening of newborns.

Newborn screening is performed under public health authority, with analysis carried out primarily by public health laboratories or other centralized laboratories. Increasingly, opportunities to improve infant health will arise from including screening tests that are completed at the birth centers instead of in centralized laboratories, constituting a significant shift for newborn screening. This report summarizes a framework developed by the US Secretary of Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children based on a series of meetings held during 2011 and 2012. These meetings were for the purpose of evaluating whether conditions identifiable through point-of-care screening should be added to the recommended universal screening panel, and to identify key considerations for birth hospitals, public health agencies, and clinicians when point-of-care newborn screening is implemented.

Strategies for addressing barriers to publishing pediatric quality improvement research.

BACKGROUND: Advancing the science of quality improvement (QI) requires dissemination of the results of QI. However, the results of few QI interventions reach publication. OBJECTIVE: To identify barriers to publishing results of pediatric QI research and provide practical strategies that QI researchers can use to enhance publishability of their work. METHODS: We reviewed and summarized a workshop conducted at the Pediatric Academic Societies 2007 meeting in Toronto, Ontario, Canada, on conducting and publishing QI research. We also interviewed 7 experts (QI researchers, administrators, journal editors, and health services researchers who have reviewed QI manuscripts) about common reasons that QI research fails to reach publication. We also reviewed recently published pediatric QI articles to find specific examples of tactics to enhance publishability, as identified in interviews and the workshop. RESULTS: We found barriers at all stages of the QI process, from identifying an appropriate quality issue to address to drafting the manuscript. Strategies for overcoming these barriers included collaborating with research methodologists, creating incentives to publish, choosing a study design to include a control group, increasing sample size through research networks, and choosing appropriate process and clinical quality measures. Several well-conducted, successfully published QI studies in pediatrics offer guidance to other researchers in implementing these strategies in their own work. CONCLUSION: Specific, feasible approaches can be used to improve opportunities for publication in pediatric, QI, and general medical journals.

Identifying children's health care quality measures for Medicaid and CHIP: an evidence-informed, publicly transparent expert process.

OBJECTIVE: To describe the process used to identify the recommended core set of quality measures as mandated by the Children's Health Insurance Program Reauthorization Act of 2009 (CHIPRA) and provide an overview of the measures selected. METHODS: In May 2009, the multidisciplinary Agency for Healthcare Research and Quality (AHRQ) National Advisory Council for Healthcare Research and Quality Subcommittee on Children's Healthcare Quality Measures for Medicaid and CHIP Programs (SNAC) was formed. The SNAC established criteria to evaluate quality measures on the basis of their validity, feasibility, and importance. Subsequently, AHRQ implemented a measure nomination process. Nominators supplied key information related to measure validity, feasibility, and importance. Oxford Centre for Evidence-Based Medicine (CEBM) criteria were used to assess evidence supporting the validity/scientific soundness of nominated measures. SNAC members applied an adaptation of the RAND-UCLA modified Delphi process to all nominated measures. Measures passing the Delphi process were further assessed on the basis of criteria pertaining to legislative priorities. RESULTS: Seventy of 119 nominated measures met criteria for validity, feasibility, and importance according to Delphi scoring. After further prioritization, 25 measures were recommended for the initial core set. Twelve of the recommended measures focus on preventive care and health promotion including prenatal/perinatal care (4), well-child care (1), immunizations (2), screening for: developmental delays (1), obesity (1), and sexually transmitted infections (1), and receipt of preventive dental services (2). Five acute care measures were recommended which focus on management of upper respiratory illnesses (2), receipt of acute care dental services (1), emergency department utilization (1), and inpatient rates of central line associated bloodstream infections (1). Five of the recommended measures focus on chronic care, specifically asthma (1), attention-deficit/hyperactivity disorder (1), diabetes (1), and care for children with mental health conditions (2). Two of the measures focus on family experiences with care, and one of the measures assesses utilization of outpatient primary care services. Thirteen (52%) of the measures were derived from the National Committee for Quality Assurance (NCQA) Healthcare Effectiveness Data and Information Set (HEDIS). Eighteen of the measures were supported by relatively high levels of evidence (Oxford CEBM grade A or B). CONCLUSIONS: An open national public process combined with an evidence-informed evaluation methodology resulted in identification of a balanced, grounded, and parsimonious core set of measures that should become feasible to implement on a widespread scale over time.

The Children's Health Insurance Program Reauthorization Act quality measures initiatives: moving forward to improve measurement, care, and child and adolescent outcomes.

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.

Accelerating evidence into practice for the benefit of children with early hearing loss.

Over the years, multiple groups have issued recommendations for newborn hearing screening, diagnosis, and intervention. In January 2008, the US Department of Health and Human Services held an invitational workshop at which more than 50 national experts met for 2 days to consider ways to accelerate the movement of evidence-based recommendations into practice. Participants set priorities among existing recommendations, identified areas with the most promise and created a national blueprint to accelerate evidence into practice. Workshop participants adopted the "3T's Roadmap to Transform US Health Care" as the conceptual model for this work and used a modified Delphi process to identify high-priority recommendations in 5 areas (diagnosis, treatment, parental and public awareness, continuous quality improvement, and stewardship). A matrix of responsibility was developed to specify entities that could take action to implement these recommendations. Participants placed a high priority on measurement and recommended improved data-tracking of newborns after screening and creation of a limited set of national indicators to monitor progress toward evidence-based system goals. They also identified a greater role for parents and families in contributing to system transformation and a need for more culturally and linguistically appropriate resources. Targeting infants in the NICU for early testing and creating guidelines and resources for early intervention were additional priorities. Finally, the work group noted the need to create a stewardship function to monitor the progress of the entire system of care, disseminate reports, consider future research directions, and continue to develop critical cross-agency and public-private coordination of activities.

Annual report on health care for children and youth in the United States: racial/ethnic and socioeconomic disparities in children's health care quality.

OBJECTIVE: The aim of this study was to explore the joint effect of race/ethnicity and insurance status/expected payer or income on children's health care quality. METHODS: The analyses are based on data from a nationally representative random sample of children in the United States in 2004 and 2005 from the Medical Expenditure Panel Survey (MEPS) and pediatric hospitalizations from a nationwide sample of hospitals in 2005 from the State Inpatient Databases disparities analysis file from the Healthcare Cost and Utilization Project (HCUP). We provide estimates of differences in race/ethnicity within income and insurance/expected payer categories on key pediatric quality indicators to provide a more nuanced understanding of disparities in care for children. Our indicators of quality cover several domains from the Institute of Medicine report, including effectiveness, patient centeredness, timeliness, and patient safety. RESULTS: Across a broad set of 23 quality indicators, findings indicate that racial/ethnic disparities vary by income levels and types of insurance. Key highlights include the finding that racial/ethnic differences within income or insurance/payer groups are more pronounced for some racial/ethnic groups than others. Hispanic children followed by Asian children had worse quality than whites as measured by the majority of quality indicators. Exceptions included rates of admissions for diabetes, admissions for gastroenteritis, accidental puncture during procedures, and decubitus ulcers. Many indicators showed less than ideal quality for all subgroups of children, even whites with private insurance. CONCLUSIONS: The extensive findings in this report make clear that patterns of racial/ethnic disparity vary by income and insurance/expected payer subgroup. However, disparities in quality are not similar across all measures of quality, and strategies to address these disparities need to be designed with these nuances in mind.