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.

Educating health care professionals in advocacy for childhood obesity prevention in their communities: integrating public health and primary care in the Be Our Voice project.

OBJECTIVES: We assessed the perceived need for and the effectiveness of the Be Our Voice advocacy training. In this training, health care professionals learned public health strategies to advocate for environmental systems changes to prevent childhood obesity in their communities. METHODS: We assessed 13 trainings across 8 pilot sites. We conducted 2 rounds of surveys with participants-pre-training (n=287, 84% response rate) and immediately post-training (n=254, 75% response rate)-and semi-structured interviews with participants after training (n=25). RESULTS: We uncovered essential and promising elements of the training. Primary care providers found the Be Our Voice training effective at building their comfort with and motivation for engaging in public health advocacy; they reported achieving learning objectives, and they had positive responses to the training overall and to specific sessions. They articulated the need for the training and plans for advocacy in their communities. CONCLUSIONS: The Be Our Voice training provides an opportunity to integrate primary care providers into public health, community-based advocacy. It may be a model for future educational offerings for health care professionals in graduate and postgraduate training and in practice.

A Coaching Model to Promote Economic Mobility and Child Developmental Outcomes.

OBJECTIVES: Children growing up in poverty experience worse developmental outcomes than their more economically advantaged peers. Whether Mobility Mentoring, a program focused on building parent executive function to promote economic mobility, results in improved child developmental outcomes is not known. METHODS: This study population was drawn from children enrolled in Washington State's public, income-qualified prekindergarten program and their families. We used a quasi-experimental, preintervention-postintervention design with 2 contemporaneous comparison groups: children in the same settings whose families did not receive the intervention and children in settings in which the intervention was not offered. Primary outcomes are improvement in each of the 6 dimensions of the Teaching Strategies GOLD (TSG) measure (social-emotional, physical, cognitive, language, literacy, and mathematics) and meeting or exceeding "widely held expectations" in all of these 6 dimensions. RESULTS: Within sites that offered the coaching program, children whose parents received the program (n = 2609) showed gains in 2 of 6 TSG dimensions compared with children (n = 440) whose parents did not, and also met or exceeded widely held expectations. TSG outcomes of all children in sites offering the intervention (n = 3049) did not differ from those of children in sites that did not (n = 7216). CONCLUSIONS: Findings provide sufficient evidence of a positive impact of Mobility Mentoring on child development to merit further study. If substantiated, building parental executive function may improve child outcomes as well as enhance progress toward economic self-sufficiency, and potentially be more engaging than traditional family support programs.

How to scale up primary care transformation: what we know and what we need to know?

Becoming a medical home is a radical change, requiring both a new mental model for primary care and the skills and resources to accomplish it. Although numerous reports indicate practice change is feasible--particularly with technical support and either insulation from or alignment with financial incentives--sustained transformation appears difficult. We identified the following critical success factors: leadership, financial resources, personal and organizational relationships, engagement with patients and families, competence in management, improvement methods and coaching, health information technology properly applied, care coordination support, and staff development. Each factor raises researchable questions about what policies can facilitate achieving success so that transformation becomes mainstream rather than the province of the innovative few.

A family-centered, community-based system of services for children and youth with special health care needs.

OBJECTIVE: To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services. DESIGN: Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition. SETTING: Policy research group and advisors at multiple sites. PARTICIPANTS: Policy researchers, content experts on CYSHCN, family representatives, and state program directors. OUTCOME: Definition of a system of services for CYSHCN. RESULTS: This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the "community-based systems of services" contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. CONCLUSIONS: This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general.

Best Fed Beginnings: A Nationwide Quality Improvement Initiative to Increase Breastfeeding.

BACKGROUND AND OBJECTIVE: In response to a low number of Baby-Friendly-designated hospitals in the United States, the Centers for Disease Control and Prevention funded the National Institute for Children's Health Quality to conduct a national quality improvement initiative between 2011 and 2015. The initiative was entitled Best Fed Beginnings and enrolled 90 hospitals in a nationwide initiative to increase breastfeeding and achieve Baby-Friendly designation. METHODS: The intervention period lasted from July 2012 to August 2014. During that period, data on process indicators aligned with the Ten Steps to Successful Breastfeeding and outcome measures (overall and exclusively related to breastfeeding) were collected. In addition, data on the Baby-Friendly designation were collected after the end of the intervention through April 2016. Hospitals assembled multidisciplinary teams that included parent partners and community representatives. Three in-person learning sessions were interspersed with remote learning and tests of change, and a Web-based platform housed resources and data for widespread sharing. RESULTS: By April 2016, a total of 72 (80%) of the 90 hospitals received the Baby-Friendly designation, nearly doubling the number of designated hospitals in the United States. Participation in the Best Fed Beginnings initiative had significantly high correlation with designation compared with hospital applicants not in the program (Pearson's r [235]: 0.80; P < .01). Overall breastfeeding increased from 79% to 83% (t = 1.93; P = .057), and exclusive breastfeeding increased from 39% to 61% (t = 9.72; P < .001). CONCLUSIONS: A nationwide initiative of maternity care hospitals accomplished rapid transformative changes to achieve Baby-Friendly designation. These changes were accompanied by a significant increase in exclusive breastfeeding.

Participation in a Quality Improvement Collaborative and Change in Maternity Care Practices.

Care immediately following birth affects breastfeeding outcomes. This analysis compared improvement in maternity care practices from 2011 to 2013 among hospitals participating in a quality improvement collaborative, Best Fed Beginnings (BFB), to hospitals that applied but were not selected (non-Best Fed Beginnings [non-BFB]), and other hospitals, using Centers of Disease Control and Prevention's Maternity Practices in Infant Nutrition and Care (mPINC) survey data to calculate total and subscores for 7 care domains. Analysis of covariance compared change in scores from 2011 to 2013 among BFB, non-BFB, and other hospitals. BFB hospitals had twice the increase in mPINC score compared to non-BFB and a 3-fold increase compared to other hospitals. Learning collaborative participation may have accelerated progress in hospitals implementing breastfeeding-supportive maternity care.

Improving Sickle Cell Transitions of Care Through Health Information Technology.

INTRODUCTION: Transitions between inpatient and outpatient care and pediatric to adult care are associated with increased mortality for sickle cell disease (SCD) patients. As accurate and timely sharing of health information is essential during transitions, a health information technology (HIT)-enabled tool holds promise to improve care transitions. METHODS: From 2012 through 2014, the team conducted and analyzed data from an environmental scan, key informant interviews, and focus groups to inform the development of an HIT-enabled tool for SCD patients' use during care transitions. The scan included searches of peer-reviewed and gray literature to understand SCD patient needs, transition concerns, and best practices in mobile health applications, and searches of websites and online stores to identify existing transition tools and their features. Eleven focus groups consisted of four groups of SCD patients of varying ages (≥9 years); three groups of parents/caregivers of SCD patients; three groups of providers; and one with IT developers. RESULTS: In focus groups, patients and caregivers reported that the transition from home to the emergency department (ED) was the most challenging; the ED was also where transitions from pediatric to adult care usually occurred. Patients felt they were not taken seriously by unfamiliar ED providers, and their inability to convey their diagnosis, pain regimen, and detailed medical history while in significant pain hindered care. CONCLUSIONS: The environmental scan did not reveal an existing suitable transition tool, but patients, parents, providers, and IT experts saw the potential and appeal of creating a tool to meet ED health information needs to improve care transitions.

Impact of a quality improvement program on care and outcomes for children with asthma.

OBJECTIVE: To test a quality improvement intervention, a learning collaborative based on the Institute for Healthcare Improvement's Breakthrough Series methodology, specifically intended to improve care and outcomes for patients with childhood asthma. DESIGN: Randomized trial in primary care practices. SETTING: Practices in greater Boston, Mass, and greater Detroit, Mich. PARTICIPANTS: Forty-three practices, with 13 878 pediatric patients with asthma, randomized to intervention and control groups. Intervention Participation in a learning collaborative project based on the Breakthrough Series methodology of continuous quality improvement. MAIN OUTCOME MEASURES: Change from baseline in the proportion of children with persistent asthma who received appropriate medication therapy for asthma, and in the proportion of children whose parent received a written management plan for their child's asthma, as determined by telephone interviews with parents of 631 children. RESULTS: After adjusting for state, practice size, child age, sex, and within-practice clustering, no overall effect of the intervention was found. CONCLUSIONS: This methodologically rigorous assessment of a widely used quality improvement technique did not demonstrate a significant effect on processes or outcomes of care for children with asthma. Potential deficiencies in program implementation, project duration, sample selection, and data sources preclude making the general inference that this type of improvement program is ineffective. Additional rigorous studies should be undertaken under more optimal settings to assess the efficacy of this method for improving care.

Diagnostic practices for attention deficit hyperactivity disorder: a national survey of primary care physicians.

BACKGROUND: The American Academy of Pediatrics (AAP) clinical practice guideline emphasizes the appropriate diagnosis of attention deficit hyperactivity disorder (ADHD) in school-aged children. Although previous studies have shown wide variation in diagnostic practices for ADHD, few recent studies have examined nationally representative samples. OBJECTIVE: To describe practice patterns of primary care physicians evaluating school-aged children for ADHD in the late 1990s and compare the patterns with subsequently published AAP guidelines. METHODS: We surveyed a national sample of 2000 primary care pediatricians and family physicians. Of the 1076 returned surveys, 861 (43%) met data quality criteria and were included in the analysis. We tabulated frequencies for each item and used a chi2 test to examine relationships between survey items and physician characteristics. RESULTS: Primary care physicians most commonly reported conducting 1-2 new evaluations for ADHD per month, the majority spending 15-45 minutes and at least 2 office visits to confirm a diagnosis of ADHD. Although 58% of physicians used formal diagnostic criteria, only 28% reported using criteria according to the Diagnostic and Statistical Manual of Mental Disorders. Eighty-three percent reported using any teacher or school information such as report cards and rating scales. Approximately 70% used ADHD-specific rating scales, and 60% used global behavior scales. A quarter of respondents obtained laboratory tests such as hematocrit, lead, and thyroid function profile. Most physicians reported routinely assessing for coexisting conditions, ranging from 74% for tic disorders to 91% for depression and conduct disorder. CONCLUSIONS: Before the publication of AAP guidelines, primary care physicians' evaluation practices for school-aged children with ADHD varied widely, especially with respect to use of Diagnostic and Statistical Manual of Mental Disorders diagnostic criteria and inappropriate diagnostic tests.

Health care use and costs for children with attention-deficit/hyperactivity disorder: national estimates from the medical expenditure panel survey.

CONTEXT: Although attention-deficit/hyperactivity disorder (ADHD) is a highly prevalent chronic condition of childhood, little is known about patterns of health care use and associated expenditures. OBJECTIVE: To compare health care use and costs among children with ADHD, children with asthma, and the general pediatric population. DESIGN AND SETTING: The 1996 Medical Expenditure Panel Survey, a nationally representative household survey. PARTICIPANTS: All 5439 children aged 5 to 20 years from the 1996 Medical Expenditure Panel Survey were included in this analysis. Children who had ADHD, asthma, or neither (general population) were identified from International Classification of Diseases, Ninth Revision, Clinical Modification codes and prescription records. MAIN OUTCOME MEASURES: Mean health care use (outpatient visits, emergency department visits, hospital stays, home health visit days, and prescriptions) and associated expenditures. RESULTS: We identified 165 children with ADHD, 322 with asthma, and 4952 with neither diagnosis. Children with ADHD had significantly higher mean total health care costs ($1151) compared with children with asthma ($1091; P<.05) and the general population ($712; P<.001). After adjusting for age, sex, race, household income, access to care, parent education, and marital status, excess total costs were $479 for children with ADHD (P<.001) and $437 for children with asthma (P<.01). CONCLUSIONS: Overall costs of care for children with ADHD are comparable to costs for children with asthma and significantly greater than for the general pediatric population. Specific types of health care use and the sources of expenditures differ between children with ADHD and children with asthma. Because much ADHD-related care occurs within school and mental health settings, these figures likely underestimate the true costs of caring for children with this condition.

Improving care for children with attention deficit hyperactivity disorder: assessing the impact of self-assessment and targeted training on practice performance.

OBJECTIVES: Major gaps exist between usual clinical practice and evidence-based recommendations for care. Many interventions to improve care are costly and time intensive. This study sought to determine whether a clinician's self-assessment of their practice performance for the diagnosis and management of children with attention deficit hyperactivity disorder (ADHD) followed by attendance at a 2-day conference focused on system change would result in improvement in care. DESIGN: Quasi-experimental-before and after with external controls. PARTICIPANTS: Clinician attendees compared with convenience sample of nonattendees. OUTCOMES: Consistency with 10 specific recommendations from the American Academy of Pediatrics Guidelines concerning ADHD. ANALYSIS: Logistic regression, with use of generalized estimating equations to account for clustering of subjects within clinician practices. RESULTS: Widespread deficiencies in care were present prior to the intervention. Practice improved significantly more among conference attendees in 2 of the 10 performance measures (evaluation for coexisting conditions and offering treatment options), with positive trends in most of the other indicators. CONCLUSIONS: Practice assessment and system-based training may be a cost-effective strategy to improve practice performance.

Interventions to improve screening and follow-up in primary care: a systematic review of the evidence.

BACKGROUND: The American Academy of Pediatrics and other organizations recommend several screening tests as part of preventive care. The proportion of children who are appropriately screened and who receive follow-up care is low. OBJECTIVE: To conduct a systematic review of the evidence for practice-based interventions to increase the proportion of patients receiving recommended screening and follow-up services in pediatric primary care. DATA SOURCE: Medline database of journal citations. STUDY ELIGIBILITY CRITERIA, PARTICIPANTS, AND INTERVENTIONS: We developed a strategy to search MEDLINE to identify relevant articles. We selected search terms to capture categories of conditions (eg, developmental disabilities, obesity), screening tests, specific interventions (eg, quality improvement initiatives, electronic records enhancements), and primary care. We searched references of selected articles and reviewed articles suggested by experts. We included all studies with a distinct, primary care-based intervention and post-intervention screening data, and studies that focused on children and young adults (≤21 years of age). We excluded studies of newborn screening. STUDY APPRAISAL AND SYNTHESIS METHODS: Abstracts were screened by 2 reviewers and articles with relevant abstracts received full text review and were evaluated for inclusion criteria. A structured tool was used to abstract data from selected articles. Because of heterogeneous interventions and outcomes, we did not attempt a meta-analysis. RESULTS: From 2547 returned titles and abstracts, 23 articles were reviewed. Nine were pre-post comparisons, 5 were randomized trials, 3 were postintervention comparisons with a control group, 3 were postintervention cross-sectional analyses only, and 3 reported time series data. Of 14 articles with preintervention or control group data and significance testing, 12 reported increases in the proportion of patients appropriately screened. Interventions were heterogeneous and often multifaceted, and several types of interventions, such as provider/staff training, electronic medical record templates/prompts, and learning collaboratives, appeared effective in improving screening quality. Few articles described interventions to track screening results or referral completion for those with abnormal tests. Data were often limited by single-site, nonrandomized design. CONCLUSIONS: Several feasible, practice- and provider-level interventions appear to increase the quality of screening in pediatric primary care. Evidence for interventions to improve follow-up of screening tests is scant. Future research should focus on which specific interventions are most effective, whether effects are sustained over time, and what interventions improve follow-up of abnormal screening tests.

The Healthy Weight Collaborative: quality improvement methods promoting healthy weight.

Promoting healthy weight requires innovative approaches and a concerted response across all sectors of society. This commentary features the framework guiding the Healthy Weight Collaborative, a two-phased quality improvement (QI) learning collaborative and key activity of the Collaborate for Healthy Weight initiative. Multi-sector teams from primary care, public health, and community-based organizations use QI to identify, test, and implement program and policy changes in their communities related to promoting healthy weight. We describe the Collaborative's overall design based on the Action Model to Achieve Healthy People 2020 Goals and our approach of applying QI methods to advance implementation of sustainable ways to promote healthy weight and healthy equity. We provide specifics on measurement and change strategies as well as examples of Plan-Do-Study-Act cycles from teams participating in Phase 1 of the Collaborative. These teams will serve as leaders for sustainable, positive change in their communities.