Scaling Family Voices and Engagement to Measure and Improve Systems Performance and Whole Child Health: Progress and Lessons from the Child and Adolescent Health Measurement Initiative.

BACKGROUND: The 1997 legislation authorizing the United States Child Health Insurance Program sparked progress to measure and publicly report on children's healthcare services quality and system performance. To meet the moment, the national Child and Adolescent Health Measurement Initiative (CAHMI) public-private collaboration was launched to put families at the center of defining, measuring and using healthcare performance information to drive improved services quality and outcomes. METHODS: Since 1996 the CAHMI followed an intentional path of collaborative action to (1) articulate shared goals for child health and advance a comprehensive, life-course and outcomes-based healthcare performance measurement and reporting framework; (2) collaborate with families, providers, payers and government agencies to specify, validate and support national, state and local use of dozens of framework aligned measures; (3) create novel public-facing digital data query, collection and reporting tools that liberate data findings for use by families, providers, advocates, policymakers, the media and researchers (Data Resource Center, Well Visit Planner); and (4) generate field building research and systems change agendas and frameworks (Prioritizing Possibilities, Engagement In Action) to catalyze prevention, flourishing and healing centered, trauma-informed, whole child and family engaged approaches, integrated systems and supportive financing and policies. CONCLUSIONS: Lessons call for a restored, sustainable family and community engaged measurement infrastructure, public activation campaigns, and undeterred federal, state and systems leadership that implement policies to incentivize, resource, measure and remove barriers to integrated systems of care that scale family engagement to equitably promote whole child, youth and family well-being. Population health requires effective family engagement.

Improving autism and developmental screening and referral in US primary care practices serving Latinos.

LAY ABSTRACT: Latino children experience delays in access to diagnosis and treatment of autism spectrum disorder. Primary care-based screening of all children for autism spectrum disorder and referring them for services may reduce racial/ethnic differences and improve care. REAL-START, a yearlong screening intervention, was effective in increasing screening for autism spectrum disorder and general developmental delays, increasing therapy referrals, and shortening time for developmental assessment in primary care clinics with Latino patients.

Prevalence and Variation of Developmental Screening and Surveillance in Early Childhood.

Importance: Since 2001, the American Academy of Pediatrics has recommended universal developmental screening and surveillance to promote early diagnosis and intervention and to improve the outcomes of children with developmental delays and disabilities. Objective: To examine the current prevalence and variation of developmental screening and surveillance of children by various sociodemographic, enabling, and health characteristics. Design, Setting, and Participants: This cross-sectional analysis of the Health Resources and Services Administration's 2016 National Survey of Children's Health-a nationally representative survey of US children completed between June 2016 and February 2017-examined 5668 randomly selected children 9 through 35 months of age whose parent or caregiver responded to the address-based survey by mail or via a website. All analyses were weighted to account for the probability of selection and nonresponse and to reflect population counts of all noninstitutionalized US children residing in housing units. Main Outcomes and Measures: Developmental screening was measured through a validated set of 3 items indicating receipt in the past year of parent-completed screening from a health care professional with age-appropriate content regarding language development and social behavior. Surveillance was determined by an item capturing verbal elicitation of developmental concerns by a health care professional. Results: Of the estimated 9.0 million children aged 9 through 35 months, an estimated 30.4% (95% CI, 28.0%-33.0%) were reported by their parent or guardian to have received a parent-completed developmental screening and 37.1% (95% CI, 34.4%-39.8%) were reported to have received developmental surveillance from a health care professional in the past year. Characteristics associated with screening and/or surveillance that remained significant after adjustment included primary household language, family structure, household education, income, medical home, past-year preventive visit, child health status, and special health care needs. Having health care that meets medical home criteria was significantly associated with both developmental screening (adjusted rate ratio, 1.34; 95% CI, 1.13-1.57) and surveillance (adjusted rate ratio, 1.24; 95% CI, 1.08-1.42), representing an 8 to 9 absolute percentage point increase. State-level differences spanned 40 percentage points for screening (17.2% in Mississippi and 58.8% in Oregon) and surveillance (19.1% in Mississippi and 60.8% in Oregon), with approximately 90% of variation not explained by child and family characteristics. Conclusions and Relevance: Despite more than a decade of initiatives, rates of developmental screening and surveillance remain low. However, state-level variation indicates continued potential for improvement. Systems-level quality improvement efforts, building on the medical home, will be necessary to achieve recommended screening and surveillance goals.

Rates of parent-centered developmental screening: disparities and links to services access.

BACKGROUND: In 2006, the American Academy of Pediatrics recommended developmental screening of young children with a standardized screening tool as a routine component of well-child care. OBJECTIVES: To assess the national and state prevalence of standardized, parent-completed developmental screening (DS-PC) in the previous 12 months and evaluate associations between screening and receipt of an early-intervention plan or mental health services for children at higher risk. METHODS: Data from the 2007 National Survey of Children's Health were used. Nested t tests were used to compare each state to national prevalence. Logistic and multilevel regression models evaluated variations and associations with DS-PC. RESULTS: Nationally, 19.5% of children received a DS-PC in the previous 12 months, although the figure varied from 10.7% to 47% across the United States. Prevalence did not rise above 26.7% for any socioeconomic subgroup of children and was highest for younger, black, and publicly insured children and lowest for uninsured children and children with gaps in insurance coverage. Equally high-risk children varied twofold in their probability of receiving early intervention or needed mental health services according to whether they had received a DS-PC. CONCLUSIONS: There is a significant gap between the developmental screening that is recommended and what is reported nationally. When children are not screened consistently, opportunities for early identification, intervention, and treatment may be delayed. Gaps in screening and wide variations across states present considerable opportunities for cross-state learning to improve quality on this critical component of preventive pediatric care. Measurement systems for assessing prevalence and impact of screening require continued evaluation and development.

Associations of providers' language and cultural skills with Latino parents' perceptions of well-child care.

OBJECTIVE: To assess the associations of parent-primary care provider language concordance and providers' self-rated cultural competency items with Latino parent report of well-child care quality. METHODS: A cross-sectional survey of parents with children 10-50 months old and their children's providers in 3 community health centers. We used the mean scores of quality domains of the Promoting Healthy Development Survey to examine associations of parent-provider language concordance and providers' self-rated cultural competency items with the quality of well-child care provided (all scales range 0-100). RESULTS: Results are based on 462 Latino parent responses and 22 provider responses. Latino parents in language concordant patient-provider relationships did not report higher-quality well-child care. Higher parent-reported quality of care was associated with provider self-reported effectiveness in treating Latino patients in the domains of family-centered care (mean 80.5 vs 70.6; P = .02) and helpfulness of care (mean 84.2 vs 67.9; P = .02). A language-cultural competency summary scale was associated with the domain assessing family risk factors (+11.2 points; P = .02) and its subdomain of emotional assessment (+16.1 points; P = .02). CONCLUSIONS: Language concordance was not associated with parental reports of quality of well-child care. Provider self-perceived cultural competency was associated with higher scores in domains related to how content is delivered-that is, helpful and family-centered. The language-cultural competency summary score was associated with discussion of sensitive topics. These findings indicate that provider characteristics other than language concordance have greater association with quality of care and may offer opportunities to strengthen cultural competency, even among monolingual providers.

Assisting primary care practices in using office systems to promote early childhood development.

OBJECTIVE: The aim of this study was to use family-centered measures to estimate the effect of a collaborative quality improvement program designed to help practices implement systems to promote early childhood development services. METHODS: A cohort study was conducted in pediatric and family practices in Vermont and North Carolina. Eighteen collaborative education practices and 17 comparison practices participated in a 12-month program to assist practices in implementing improved systems to provide anticipatory guidance and parental education. The main outcome measures were change over time in parent-reported measures of whether children received each of 4 aspects of recommended care, documentation of developmental and psychosocial screening, and practice-reported care delivery systems. RESULTS: The number of care delivery systems increased from a mean of 12.9 to 19.4 of 27 in collaborative practices and remained the same in comparison practices (P=.0002). The proportion of children with documented developmental and psychosocial screening among intervention practices increased from 78% to 88% (P<.001) and from 22% to 29% (P=.002), respectively. Compared with control practices, there was a trend toward improvement in the proportion of parents who reported receiving at least 3 of 4 areas of care. CONCLUSION: The learning collaborative was associated with an increase in the number of practice-based systems and tools designed to elicit and address parents' concerns about their child's behavior and development and a modest improvement in parent-reported measures of the quality of care.

Measuring the quality of preventive and developmental services for young children: national estimates and patterns of clinicians' performance.

OBJECTIVE: To generate a national picture of performance in the area of preventive and developmental services for children aged 4 to 35 months using 4 composite quality measures in the areas of 1) anticipatory guidance and parental education, 2) screening for family psychosocial risks, 3) screening for smoking and drug and alcohol use in the home, and 4) provision of family-centered care. METHODS: Data from the National Survey on Early Childhood Health (N = 2068) were used to calculate the 4 composite performance measures, which, taken together, represent 23 topics included in the American Academy of Pediatrics health supervision guidelines. The reliability and degree of redundancy within and across these 4 measures were evaluated. Four methods for scoring these measures were used. Quality scores for subgroups of children were calculated, and logistic regression analysis was performed to examine the association of demographic, health, and health system variables with receiving recommended care. RESULTS: Regardless of the scoring method used, performance is highest in areas of family-centered care and screening for smoking and drug and alcohol use in the home. Performance is lowest in the areas of anticipatory guidance and education and assessment for family psychosocial risks. Using a scoring method that takes into account parent preferences for guidance and beliefs about discussing psychosocial topics, composite quality measure scores ranged from 13.5% to 59.6% of parents of young children receiving recommended care. Overall, 94.0% of parents reported 1 or more unmet needs for parenting guidance, education, and screening by pediatric clinician(s) in 1 or more of the content of care areas evaluated. Uninsured children and children aged 18 to 35 months are disproportionately represented among the 15.3% of children whose parents indicated an unmet need in each of the 4 areas of care. Although the reliability of each composite measure was high, no single item in any composite was highly correlated with the remaining combined items. Performance on any 1 composite measure for a child was only somewhat predictive of performance for the other measures. There are significant variations in performance on the basis of child age, race, insurance status, maternal education, marital status, and parent language as well as other factors. CONCLUSIONS: National results using 4 complementary composite quality measures confirm the need for improving the quality of preventive and developmental services for young children in the United States. The 4 measures identify areas of care and subgroups of children for whom improvements in quality are most needed. The measures provide a parsimonious yet comprehensive assessment across distinct health supervision topics and 4 essential aspects of preventive and developmental services. Until valid measures of outcomes of preventive and developmental services are identified or 1 single process of care measure is shown to be highly predictive of these outcomes, assessing multiple aspects of recommended care will be necessary to assess performance of health care providers or systems of care.

Assessing development in the pediatric office.

OBJECTIVE: To determine the proportion of children aged 10 to 35 months who were reported ever to have received a developmental assessment (DA) and to examine characteristics of the child, family, and health care setting associated with the receipt of a DA. METHODS: The National Survey of Early Childhood Health, conducted in 2000, is a survey of 2068 parents of children 4 to 35 months of age. Children were classified as having received a DA in response to 2 questions: whether the child's pediatric provider ever told parents that he or she was doing a "developmental assessment" and/or parents recalled explicit components of a DA, such as stacking blocks or throwing a ball. Parent-reported receipt of a DA was assessed in relationship to child and family, health care access, other measures of health care content and process, and measures of quality and satisfaction. RESULTS: Approximately 57% of children 10 to 35 months of age ever received a DA. Forty-two percent of parents recalled ever being told by their child's pediatric provider that a DA was being done. Thirty-nine percent recalled their child's being asked to perform specific tasks routinely included in a DA. Bivariate analysis indicates that receipt of a DA is not associated with child or family sociodemographic characteristics such as maternal education and household income, with the exception of race/ethnicity. Less acculturated Hispanic parents reported a DA more frequently than parents in other racial/ethnic groups (66% vs 56%). A smaller proportion of parents whose children who used community health centers reported their child's ever having received a DA compared with children who use other settings (51% vs 60%). Compared with other children, parents whose child ever received a DA reported more frequently than other parents that the time spent with the child's provider during the last well-child visit was adequate (94% vs 80%). They also reported longer visits (19 minutes vs 16 minutes), higher family-centered care ratings (mean: 71 vs 59), and higher satisfaction with well-child care (8.9 vs 8.4). Receipt of a DA is also associated with the content of developmentally focused anticipatory guidance received. For each health supervision topic analyzed, frequency of discussion is higher for children who ever received a DA. In multivariate analysis, odds of receiving a DA are higher for children with longer visits with the provider (odds ratio: 1.03; 95% confidence interval: 1.01-1.05) and lower for children in community health clinics compared with a private office (odds ratio: 0.61; 95% confidence interval: 0.39-0.96), even accounting for total well-child visits to the pediatric provider. CONCLUSION: Although guidelines endorse the routine provision of DAs, parents of many children do not report receiving DAs. Children who receive assessments are more likely to receive other developmental services, and their parents are more likely to report greater satisfaction with care and rate the interpersonal quality of well-child care more favorably. The substantial number of children who do not receive these routinely recommended services raises important questions about the quality of care received.