Christina Bethell

Identifying children with special health care needs: Development and evaluation of a short screening instrument

BACKGROUNDnPublic agencies, health care plans, providers, and consumer organizations share the need to monitor the health care needs and quality of care for children with special health care needs (CSHCN). Doing so requires a definition of CSHCN and a precise methodology for operationalizing that definition.nnnRESEARCH OBJECTIVESnThe purpose of this study was to develop an efficient and flexible consequence-based screening instrument that identifies CSHCN across populations with rates commensurate with other studies of CSHCN.nnnMETHODSnThe CSHCN Screener was developed using the federal Maternal and Child Health Bureau (MCHB) definition of CSHCN and building on the conceptual and empirical properties of the Questionnaire for Identifying Children with Chronic Conditions (QuICCC) and other consequence-based models for identifying CSHCN. The CSHCN Screener was administered to 3 samples: a national sample of households with children (n = 17985), children enrolled in Medicaid managed care health plans (n = 3894), and children receiving Supplemental Security Income (SSI) benefits in Washington State (n = 1550). The efficiency, impact of further item reduction, and flexibility of administration mode were evaluated. Rates and expected variation in rates across demographic groups of children positively identified by one or more of the 5 CSHCN Screener item sequences in each sample were examined and multinomial logistic regression analysis were conducted to evaluate the effect of child characteristics in predicting positive identification.nnnRESULTSnThe CSHCN Screener took approximately 1 minute per child to administer by telephone and 2.1 minutes per household. During self-administration, over 98% of respondents completed each of the 5 CSHCN Screener item sequences, and respondents accurately followed each of the item skip patterns 94% of the time. Mailed surveys and telephone-administered surveys led to similar rates of positive identification in the same sample. Two Screener items would have identified 80%-90% of children positively identified as CSHCN across the study samples, although using only 2 items eliminates some children with more complex health needs. Rates of children identified by the CSHCN Screener varied according to age, sex, race/ethnicity, health status, and utilization of health services.nnnCONCLUSIONSnResults of this study indicate that the CSHCN Screener requires minimal time to administer, is acceptable for use as both an interview-based and self-administered survey, and that rates of children positively identified by the CSHCN Screener vary according to child demographic, health, and health care-need characteristics. The CSHCN Screener provides a comprehensive yet parsimonious and flexible method for identifying CSHCN, making it more feasible than existing measures for standardized use across public agencies, health care plans, and other users.

What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys

ObjectivesTo compare and consider sources of variation in the prevalence and characteristics of children with special health care needs (CSHCN) identified using the CSHCN Screener across the 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN), the 2003 National Survey of Children’s Health (NSCH) and the 2001–2004 Medical Expenditures Panel Surveys (MEPS).MethodsFor each survey, national prevalence rates and the demographic, health and health need characteristics of CSHCN age 0–17xa0years were estimated and compared. The stability of CSHCN state prevalence rankings between the NS-CSHCN and NSCH was assessed. Logistic regression analysis produced adjusted odds of identification for subgroups of children. CSHCN Screener sampling and administration were profiled across eight methodology parameters for each survey.ResultsCompared to the NS-CSHCN (12.8%), CSHCN prevalence for children age 0–17xa0years was 4.8 points higher for the NSCH (17.6%) and 6.0–6.5 points higher across the four 2001–2004 MEPS datasets (18.8–19.3%). The adjusted probability of identification by child’s demographic characteristics was stable across all datasets as were state prevalence rankings between the NS-CSHCN and the NSCH. CSHCN identified through the NS-CSHCN were slightly more likely to meet more than one CSHCN Screener criteria, to meet the “above routine need or use of services” criterion and to miss two or more weeks of school due to illness compared to the NSCH, suggesting that CSHCN with less complex and/or serious health consequences may not have been as likely to be identified through the NS-CSHCN. CSHCN prevalence did not change significantly between 2001 and 2004 MEPS, although some off-setting increases or decreases in the proportion of CSHCN meeting specific CSHCN Screener criteria occurred and reflects trends toward increased prescription medication use in children.ConclusionsWhen CSHCN Screener administration methods remained similar across years (2001–2004 MEPS), CSHCN prevalence rates were stable. When methods varied between surveys, CSHCN prevalence rates differed. These differences suggest that prevalence is best expressed as a range, rather than as a point estimate. However, once identified, characteristics and health needs of CSHCN were stable across surveys evaluated, each of which has unique strengths for purposes of policy and research.

National, State, And Local Disparities In Childhood Obesity

New data from the 2007 National Survey of Childrens Health show that the percentage of children ages 10-17 who are overweight (body mass index in the eighty-fifth to ninety-fourth percentiles) remained stable, while the national prevalence of obesity (BMI in the ninety-fifth percentile and higher) grew significantly, from 14.8 percent in 2003 to 16.4 percent in 2007. This increase in obesity accounted for the entire increase in the combined prevalence of overweight and obesity between 2003 and 2007 (from 30.6 percent to 31.6 percent). An estimated 10.58 million children, or nearly one in three children ages 10-17, were overweight or obese in 2007. Our findings suggest that the obesity epidemic among children may not yet have reached its plateau for some groups of children. The data also reveal persistent and highly variable disparities in childhood overweight and obesity within and among states, associated with socioeconomic status, school outcomes, neighborhoods, type of health insurance, and quality of care. This requires policy makers attention nationally and within states.

A National and State Profile of Leading Health Problems and Health Care Quality for US Children: Key Insurance Disparities and Across-State Variations

BACKGROUNDnParent/consumer-reported data is valuable and necessary for population-based assessment of many key child health and health care quality measures relevant to both the Childrens Health Insurance Program Reauthorization Act (CHIPRA) of 2009 and the Patient Protection and Affordable Care Act of 2010 (ACA).nnnOBJECTIVESnThe aim of this study was to evaluate national and state prevalence of health problems and special health care needs in US children; to estimate health care quality related to adequacy and consistency of insurance coverage, access to specialist, mental health and preventive medical and dental care, developmental screening, and whether children meet criteria for having a medical home, including care coordination and family centeredness; and to assess differences in health and health care quality for children by insurance type, special health care needs status, race/ethnicity, and/or state of residence.nnnMETHODSnNational and state level estimates were derived from the 2007 National Survey of Childrens Health (N = 91,642; children aged 0-17 years). Variations between children with public versus private sector health insurance, special health care needs, specific conditions, race/ethnicity, and across states were evaluated using multivariate logistic regression and/or standardized statistical tests.nnnRESULTSnAn estimated 43% of US children (32 million) currently have at least 1 of 20 chronic health conditions assessed, increasing to 54.1% when overweight, obesity, or being at risk for developmental delays are included; 19.2% (14.2 million) have conditions resulting in a special health care need, a 1.6 point increase since 2003. Compared with privately insured children, the prevalence, complexity, and severity of health problems were systematically greater for the 29.1% of all children who are publicly insured children after adjusting for variations in demographic and socioeconomic factors. Forty-five percent of all children in the United States scored positively on a minimal quality composite measure: 1) adequate insurance, 2) preventive care visit, and 3) medical home. A 22.2 point difference existed across states and there were wide variations by health condition (autism, 22.8, to asthma, 39.4). After adjustment for demographic and health status differences, quality of care varied between children with public versus private health insurance on all but the following 3 measures: not receiving needed mental health services, care coordination, and performance on the minimal quality composite. A 4.60 fold (gaps in insurance) to 1.27 fold (preventive dental and medical care visits) difference in quality scores was observed across states. Notable disparities were observed among publicly insured children according to race/ethnicity and across all children by special needs status and household income.nnnCONCLUSIONSnFindings emphasize the importance of health care insurance duration and adequacy, health care access, chronic condition management, and other quality of care goals reflected in the 2009 CHIPRA legislation and the ACA. Despite disparities, similarities for public and privately insured children speak to the pervasive nature of availability, coverage, and access issues for mental health services in the United States, as well as the system-wide problem of care coordination and accessing specialist care for all children. Variations across states in key areas amenable to state policy and program management support cross-state learning and improvement efforts.

Comparison of the Children With Special Health Care Needs Screener to the Questionnaire for Identifying Children With Chronic Conditions—Revised

BACKGROUNDnThe Children with Special Health Care Needs (CSHCN) Screener is an instrument to identify CSHCN, one that is based on parent-reported consequences experienced by children with ongoing health conditions. Information about how this instrument compares to other methods for identifying CSHCN is important for current and future uses of the CSHCN Screener.nnnRESEARCH OBJECTIVESnThe goal of this study was to assess the level of agreement between the CSHCN Screener and the Questionnaire for Identifying Children With Chronic Conditions--Revised (QuICCC-R) and to describe the characteristics of children in whom these methods do not agree.nnnMETHODSnThe CSHCN Screener and the QuICCC-R were administered to 2 samples: a random sample of parents of children under age 18 years through the first pretest of the National CSHCN Survey (n = 2420) and a random sample of children under age 14 years enrolled in a managed care health plan (n = 497). Information on specific conditions and needs for health services were collected for children identified by one or both instruments in the national sample. Data from the administrative data-based Clinical Risk Groups (CRGs) were collected for all children in the health plan sample. The proportions of children identified with the CSHCN Screener and the QuICCC-R were compared, the level of agreement between these 2 methods was assessed, and the health service needs of children identified by the QuICCC-R but not the CSHCN Screener were evaluated.nnnRESULTSnIn both study samples, the CSHCN Screener agreed with the QuICCC-R approximately 9 out of 10 times on whether or not a child was identified as having a special health care need. Compared to the CSHCN Screener, the QuICCC-R identified an additional 7.6% and 8.5% of children as having special health care needs in the national and health plan samples, respectively. Compared to children identified by the QuICCC-R only, the odds were 12 times greater that children identified by both the CSHCN Screener and the QuICCC-R needed health care services, 6 times greater that parents named a specific chronic health condition, and 9 times greater that children were identified with a chronic condition using the CRG algorithm. Study design and purposeful differences in question design or content account for most cases in which children are not identified by the CSHCN Screener but are identified using the QuICCC-R.nnnCONCLUSIONSnThe brief CSHCN Screener exhibits a high level of agreement with the longer QuICCC-R instrument. Whereas nearly all children identified by the CSHCN Screener are also identified by the QuICCC-R, the QuICCC-R classifies a higher proportion of children as having special health care needs.

Adverse Childhood Experiences: Assessing The Impact On Health And School Engagement And The Mitigating Role Of Resilience

The ongoing longitudinal Adverse Childhood Experiences Study of adults has found significant associations between chronic conditions; quality of life and life expectancy in adulthood; and the trauma and stress associated with adverse childhood experiences, including physical or emotional abuse or neglect, deprivation, or exposure to violence. Less is known about the population-based epidemiology of adverse childhood experiences among US children. Using the 2011-12 National Survey of Childrens Health, we assessed the prevalence of adverse childhood experiences and associations between them and factors affecting childrens development and lifelong health. After we adjusted for confounding factors, we found lower rates of school engagement and higher rates of chronic disease among children with adverse childhood experiences. Our findings suggest that building resilience-defined in the survey as staying calm and in control when faced with a challenge, for children ages 6-17-can ameliorate the negative impact of adverse childhood experiences. We found higher rates of school engagement among children with adverse childhood experiences who demonstrated resilience, as well as higher rates of resilience among children with such experiences who received care in a family-centered medical home. We recommend a coordinated effort to fill knowledge gaps and translate existing knowledge about adverse childhood experiences and resilience into national, state, and local policies, with a focus on addressing childhood trauma in health systems as they evolve during ongoing reform.

Differentiating Subgroups of Children with Special Health Care Needs by Health Status and Complexity of Health Care Needs

Objectives Our objective is to use the Children with Special Health Care Needs (CSHCN) Screener to identify subgroups of CSHCN differentiated by health status and complexity of need. Methods Data are from the National Survey of Children with Special Health Care Needs, 2001 and the National Survey of Children’s Health, 2003 (conducted by the Maternal and Child Health Bureau and the National Center for Health Statistics); and the 2001 and 2002 Medical Expenditure Panel Survey, conducted by the Agency for Healthcare Research and Quality. A broad array of variables measuring health status, complexity of need, and related issues are examined by subgroupings of CSHCN. Results Relative to other CSHCN, CSHCN with functional limitations or who qualify on more CSHCN Screener items have poorer health status and more complex health care needs. They more often experience a variety of health issues; their insurance is more often inadequate; the impact of their conditions on their families is higher; and their medical costs are higher. Conclusion In the absence of information on specific conditions, health status, or complexity of need, the CSHCN Screener alone can be used to create useful analytic subgroups that differ on these dimensions. The proposed subgroups, based on the type or number of CSHCN screening criteria, differentiate CSHCN by health status and complexity of health care needs, and also show differences in the impact of their conditions on their families, costs of their medical care, and prevalence of various health problems.

Assessing Health System Provision of Adolescent Preventive Services: The Young Adult Health Care Survey

Background.Adolescents often do not receive recommended preventive counseling and screening services. Few measures are available to assess health care system performance in this area. Objective.Develop a reliable, valid, and feasible method for measuring adherence to consensus guidelines for adolescent preventive counseling and screening services. Methods.The 45-item Young Adult Health Care Survey (YAHCS) was tested with a diverse group of commercially and publicly insured adolescents enrolled in managed care organizations (n = 4,060). Psychometric, bivariate, and multivariate analyses were conducted to assess the reliability, validity, and patterns of variation in the preventive care measurement scales derived from the YAHCS. Results.YAHCS measurement scales demonstrated strong construct validity (mean factor loading = 0.64) and reliability (mean Cronbach’s alpha = 0.77). Average preventive counseling and screening scores ranged from 18.2% for discussing risky behavior topics to 50.4% for discussing diet, weight, and exercise topics. Adolescent demographic, health care use, and payer factors explained a small amount of variation across adolescent scores on YACHS scales (mean R2 = 0.086). Females and older teens were more likely to report private time with providers and counseling and screening on topics related to sex. Overall, the odds of receiving preventive counseling and screening for adolescents who reported having private time with providers, engaging in risky behaviors, or both were higher than for adolescents who did not meet privately or report risky behaviors (private visit OR, 3.60; 95% CI, 2.91–4.47; risky behaviors OR, 2.02; 95% CI, 1.62–2.52). Conclusions.The YAHCS provides a feasible, reliable, and valid method for assessing adherence to adolescent preventive services guidelines. It differentiates among varied aspects of preventive care provided to adolescents and is promising as a potential measure of health plan and provider quality. Improved performance on the YAHCS would indicate progress toward the achievement of Healthy People 2010 goals.

Care coordination for CSHCN: associations with family-provider relations and family/child outcomes.

OBJECTIVE: To examine the association between receiving adequate care coordination (CC) with family-provider relations and family/child outcomes. METHODS: We analyzed data from the 2005–2006 National Survey of Children With Special Health Care Needs. Eligible subjects were the 88% of families asked about experience with CC, service use, and communication. Respondents also reported on demographic characteristics, health status, family-provider relations, and family/child outcomes. Weighted, multivariate logistic regression models were constructed to assess independent associations of adequate CC with outcomes. RESULTS: Among families with children with special health care needs asked about CC, 68.2% reported receiving some type of CC help. Of these, 59.2% reported receiving adequate CC help, and 40.8% reported inadequate CC. Families that reported adequate compared with inadequate CC had increased odds of receiving family-centered care, experiencing partnerships with professionals, and satisfaction with services. They had decreased odds of having problems with referrals for specialty care, missing >6 school days because of illness (previous year), and visiting the emergency department more than twice in the previous 12 months (P < .001). Those who reported adequate compared with inadequate CC had decreased odds of the following: more than

Pediatrician identification of Latino children at risk for autism spectrum disorder

500/y of out-of-pocket expenses, family financial burden, spending more than 4 hours/week coordinating care, and stopping/reducing work hours. CONCLUSIONS: Parental report of adequate CC was associated with favorable family-provider relations and family/child outcomes. Additional efforts are needed to discern which aspects of CC are most beneficial and for which subgroups of children with special health care needs.