National Survey Of Children With Special Health Care Needs Research Articles

National Survey Data to Evaluate Case Management Services: A Systematic Review on Care Coordination Using the National Survey of Children With Special Health Care Needs.

Purpose of Study: The National Survey of Children with Special Health Care Needs (NS-CSHCN) is a publicly available resource that can be utilized to evaluate case management services such as care coordination. The authors sought to identify how researchers operationalize care coordination when utilizing this resource. Primary Practice Setting: National outpatient survey. Methodology and Sample: MEDLINE, PsycINFO, and CINAHL Complete were searched for studies that utilized the NS-CSHCN and report on outcomes of pediatric care coordination. Data from studies were extracted and results are descriptively reported. Results: The authors screened 4,577 citations and included 19 studies reporting on the impact of pediatric care coordination. Care coordination was defined differently and was sometimes captured as part of the medical home definition, or assessed using study-specific questions on coordinated services and satisfaction with communication from the medical team. Implications for Case Management Practice:

Medicaid physician fees and access to care among children with special health care needs

The objective of this study is to use data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) to test whether Medicaid physician fees are correlated with access to health services and adequacy of insurance coverage among CSHCN. We start with a difference-in-differences method, comparing the effects of Medicaid physician fees on outcomes of publicly-insured children in states that raised fees vs. in states that did not. As our preferred specification, we then estimate a triple difference model using privately-insured children as the comparison group. Our findings indicate that raising the Medicaid primary care fee level close to at least 90 percent of the Medicare level reduces the likelihood that publicly-insured CSHCN lack a usual source of care in a doctor’s office by about 15 percent. Fee increases are associated with improved access to specialty doctor care and large improvements in caregivers’ satisfaction with the adequacy of health insurance coverage among publicly-insured CSHCN. Results for some other access measures, such as global measures of having difficulties and delays accessing services, were mixed.

The Relationship Between Physical Activity and School Success Among Children With and Without Special Health Care Needs.

School-environments are thought to be strong influences of behavioral choices. There is limited research available on the role of physical activity (PA) and school success among children with special health care needs (CSHCN). The purpose of this study was to explore differences in PA among CSHCN and non-CSHCN and how the school success index is related to PA in both groups. Data were taken from new version of the National Survey of Children's Health (NSCH), which consolidated questions from the previous NSCH and the National Survey of Children with Special Health Care Needs (NS-CSHCN). Chi-square and logistic regression analyses were employed to examine group differences. There were significant differences among both subgroups, although most school-aged children did not meet recommended PA guidelines. Chi-squared analyses indicated; school engagement and the parent's perception of child safety at school were associated with the likelihood of meeting PA guidelines. Logistic regression analyses showed that the odds of meeting PA guidelines were associated with the school success index. Comprehensive school health programs should focus on PA both subgroups. School health educators should continue to advocate for safe and structured extracurricular activities to improve the child and adolescent's engagement and overall well-being.

Bibliometric Analysis of Research Studies Based on Federally Funded Children's Health Surveys.

Bibliometric analyses are commonly used to measure the productivity of researchers or institutions but rarely used to assess the scientific contribution of national surveys/datasets. We applied bibliometric methods to quantify the contributions of the National Survey of Children's Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN) to the body of pediatric health-related research. We also examined dissemination to nonresearch audiences by analyzing media coverage of statistics and research produced from the surveys. We conducted a search of the Web of Science database to identify peer-reviewed articles related to the NSCH and NS-CSHCN published between 2002 and 2019. We summarized information about citation counts, publishing journals, key research areas, and institutions using the surveys. We used the Lexis Advance database Nexis to assess media coverage. The publication set included 716 NSCH/NS-CSHCN journal articles published between 2002 and June 2019. These publications have in turn been cited 22,449 times, including in 1614 review articles. Over 180 journals have published NSCH/NS-CSHCN articles, and the most commonly covered research areas are in pediatrics; public, environmental and occupational health; psychology; and health care sciences and services. Over 500 institutions have used NSCH/NS-CSHCN data to publish journal articles, and over 950 news media articles have cited statistics or research produced by the surveys. NSCH/NS-CSHCN data are widely used by government, academic, and media institutions. Bibliometric methods provide a systematic approach to quantify and describe the contributions to the scientific literature made possible with these data.

Unmet Respite Needs of Children With Medical Technology Dependence.

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

Do Children with Special Health Care Needs with Anxiety have Unmet Health Care Needs? An Analysis of a National Survey.

To describe differences in health care needs between Children with Special Health Care Needs (CSHCN) with and without anxiety and examine the association between anxiety and unmet health care needs. We analyzed data from the 2009/2010 national survey of CSHCN. The independent variable was anxiety. The main outcomes were health care needs and unmet needs. Covariates included demographics, other co-morbid conditions, and the presence and quality of a medical home. We used bivariate analyses and multivariable logistic regression to assess the relationships among anxiety, covariates, and the outcomes. We stratified our analysis by age (6-11years, 12-17years). Propensity score matched paired analysis was used as a sensitivity analysis. Our final sample included 14,713 6-11year-olds and 15,842 12-17-year-olds. Anxiety was present in 16% of 6-11year-olds and 23% or 12-17year-olds. In bivariate analyses, CSHCN with anxiety had increased health care needs and unmet needs, compared to CSHCN without anxiety. In multivariable analyses, only children 12-17years old with anxiety had increased odds of having an unmet health care need compared to those children without anxiety (OR 1.44 [95% CI 1.17-1.78]). This was confirmed in the propensity score matching analysis (OR 1.12, [95% CI 1.02-1.22]). The specific unmet needs for older CSHCN with anxiety were mental health care (OR 1.54 [95% CI 1.09-2.17]) and well child checkups (OR 2.01 [95% CI 1.18-3.44]). Better integration of the care for mental and physical health is needed to ensure CSHCN with anxiety have all of their health care needs met.

CSHCN with hearing difficulties: Disparities in access and quality of care

BackgroundHearing difficulties (HD) affect a sizable minority of children in the United States and can have a significant impact on child development. Children with HD may face barriers around language development, communication abilities, learning, and social interactions, which in turn can affect multiple aspects of their lives. Objective/HypothesisLittle is known about the extent to which children with HD have access to a system of care and we hypothesize that this population may experience significant unmet needs. MethodsIn this cross-sectional study, using bivariate and multivariable regression models, we analyzed data from the 2009/2010 National Survey of Children with Special Health Care Needs (NS-CSHCN). Selected survey items were used to assess health and healthcare characteristics of CSHCN with some level of HD (n = 2,315) compared to those without HD (n = 37,851). The study sample included 40,242 CSHCN aged 0–17 years, whose caregivers responded to the survey. ResultsApproximately 694,000 CSHCN in the U.S. were reported to have any level of HD, representing 6.3% of the CSHCN population. Compared to CSHCN without HD, those with HD were less likely to have access to a medical home, community services, or have adequate health insurance. ConclusionsSignificant deficits in medical home access, adequate insurance, and accessibility of community-based services are evident for CSHCN with HD. Families having knowledge of how and when to access community services and partner with providers in their child's health care is important for the overall health and wellbeing of this subpopulation of CSHCN.

Clinical Care Coordination in Medically Complex Pediatric Cases: Results From the National Survey of Children With Special Health Care Needs.

This study uses a secondary analysis of the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) to describe care coordination (CC) for children with medical complexity (CMC). Chi-square test, t test, and multivariate logistic regression statistical tests are used to determine the relationships and differences between sources of CC and factors associated with receiving clinic-based CC for CMC and their family. Among CMC, 66.47% received no CC support and 25.73% received clinic-based CC. In multivariate models, families reporting dissatisfaction with communication between health care providers or reporting family-centered care were less likely to receive clinic-based CC. Families were more likely to receive clinic-based CC if they had younger children, lower household income, and greater school absenteeism. Clinic-based CC is associated with improved communication between health providers but must become more family-centered and minimize student absenteeism for the CMC population.

Influences on Parent Perceptions of Autism Severity

Research in autism spectrum disorder (ASD) often relies on parent report for describing behavior and symptoms. Psychometric studies in assessment have supported the utility of parent report; however, cultural and external factors may influence ratings of severity. The purpose of this study was to investigate if parent characteristics influence the severity rating of ASD over and above child characteristics. Using the 2009–2010 National Survey of Children With Special Health Care Needs (NS-CSHCN), we examined 3,037 parents who answered questions about their child’s ASD symptoms. We used hierarchical multiple regression to assess child-level variables (age, developmental delay, intellectual disability, and number of co-occurring emotional or behavioral conditions) and family-level variables (education, income, and language). We also performed mediation analyses to examine the relationship between language and severity ratings. Parents rated their child’s ASD as mild (52.3%), moderate (36%), or severe (11.8%). Parent-level variables explained a significant amount of variance over and above child-level variables. Several different stressors and challenges for English Language Learner parents mediated the relationship between language and severe ASD ratings. When asking parents to evaluate a child’s ASD symptoms, clinicians and researchers must consider the influence of sociocultural factors on ratings. In addition, because parent perception can drive help-seeking behaviors, professionals need to understand that there may be differences across sociocultural groups. Future research should investigate which sociocultural perceptions or expectations may be affecting parent ratings of ASD severity.

Functional limitations and educational needs among children and adolescents with heart disease.

To examine how cognitive and motor limitations in children with heart disease are associated with education and participation in extracurricular activities. Using 2009-2010 parent-reported data from the National Survey of Children with Special Health Care Needs (NS-CSHCN), we examined prevalence of five functional limitations (learning/concentration, communication, self-care, gross motor skills, and fine motor skills) by diagnosed heart disease status using chi-square tests and multivariable logistic regression. Among CSHCN with heart disease, we examined the associations between severity of each functional limitation and missing ≥11 days of school in the past year, receiving special education services, and interference with extracurricular activities. CSHCN with heart disease (n = 1,416), compared to CSHCN without (n = 28,385), more commonly had "a lot" of difficulty in the five functional areas (P < .01; adjusted odds ratios: 1.8-3.3). Among CSHCN with heart disease, "a lot" of difficulty with learning/concentration was most common (35%), followed by communication (21%), self-care (14%), gross motor skills (12%), and fine motor skills (10%). Among CSHCN with heart disease, compared to those without, respectively, 27% and 15% missed ≥11 days of school, 45% and 29% received special education services, and 49% and 29% experienced interference with extracurricular activities (P < .01 for all). Level of difficulty with the five functional areas was associated with receipt of special education services and participation in extracurricular activities (P < .001). These results support the American Heart Association recommendations to screen children with congenital heart disease for age-appropriate development and provide services when needed.

Predictors of Coordinated and Comprehensive Care Within a Medical Home for Children With Special Healthcare (CHSCN) Needs.

The purpose of this study was to examine predictors of coordinated and comprehensive care within a medical home among children with special health care needs (CSHCN). The latest version of the National Survey of Children with Special Health Care Needs (NS-CSHCN) employed a national random-digit-dial sample whereby US households were screened, resulting in 40,242 eligible respondents. Logistic regression analyses were performed modeling the probability of coordinated, comprehensive care in a medical home based on shared decision-making and other factors. A total of 29,845 cases were selected for inclusion in the model. Of these, 17,390 cases (58.3%) met the criteria for coordinated, comprehensive care in a medical home. Access to a community-based service systems had the greatest positive impact on coordinated, comprehensive care in a medical home. Adequate insurance coverage and being White/Caucasian were also positively associated with the dependent variable. Shared decision-making was reported by 72% of respondents and had a negative, but relatively negligible impact on coordinated, comprehensive care in a medical home. Increasing age, non-traditional family structures, urban residence, and public insurance were more influential, and negatively impacted the dependent variable. Providers and their respective organizations should seek to expand and improve health and support services at the community level.

The Design and Implementation of the 2016 National Survey of Children's Health.

Introduction Since 2001, the Health Resources and Services Administration's Maternal and Child Health Bureau (HRSA MCHB) has funded and directed the National Survey of Children's Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN), unique sources of national and state-level data on child health and health care. Between 2012 and 2015, HRSA MCHB redesigned the surveys, combining content into a single survey, and shifting from a periodic interviewer-assisted telephone survey to an annual self-administered web/paper-based survey utilizing an address-based sampling frame. Methods The U.S. Census Bureau fielded the redesigned NSCH using a random sample of addresses drawn from the Census Master Address File, supplemented with a unique administrative flag to identify households most likely to include children. Data were collected June 2016-February 2017 using a multi-mode design, encouraging web-based responses while allowing for paper mail-in responses. A parent/caregiver knowledgeable about the child's health completed an age-appropriate questionnaire. Experiments on incentives, branding, and contact strategies were conducted. Results Data were released in September 2017. The final sample size was 50,212 children; the overall weighted response rate was 40.7%. Comparison of 2016 estimates to those from previous survey iterations are not appropriate due to sampling and mode changes. Discussion The NSCH remains an invaluable data source for key measures of child health and attendant health care system, family, and community factors. The redesigned survey extended the utility of this resource while seeking a balance between previous strengths and innovations now possible.

Financial burdens and mental health needs in families of children with congenital heart disease

To examine the financial burdens and mental health needs of families of children with special healthcare needs (CSHCN) with congenital heart disease (CHD). Data from the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were used to examine parent-reported financial burdens (out-of-pocket expenses, financial problems, employment impact, caregiving hours) and family members' need for mental health services in families of CSHCN with CHD. Multivariable logistic regression was used to compare financial burdens and family members' need for mental health services among CSHCN with and without CHD. Among CSHCN with CHD, multivariable logistic regression, stratified by age (0-5 and 6-17 years), was used to assess characteristics associated with the outcomes. Overall, families of 89.1% of CSHCN with CHD experienced at least one financial burden and 14.9% needed mental health services due to the child's condition. Compared with CSHCN without CHD, those with CHD had families with a higher prevalence of all financial burdens (adjusted prevalence ratio [aPR] range: 1.4-1.8) and similar family member need for mental health services (aPR = 1.3, 95% CI [1.0, 1.6]). Across both age groups, insurance type, activity limitations, and comorbidities were significantly associated with financial burdens and/or family members' need for mental health services. CSHCN with CHD, compared with those without CHD, lived in families with more financial burdens. Interventions that reduce financial burdens and improve mental health of family members are needed, especially among CSHCN with CHD who are uninsured and have comorbidities or activity limitations.

Methodologic Considerations for Transition Research Using the National Survey of Children with Special Health Care Needs: A Systematic Review of the Literature

The purpose of this review was to describe methodologic considerations in using the National Survey of Children With Special Health Care Needs (NS-CSHCN) for transition research in terms of variable inclusion and definition of transition outcomes and to provide suggestions for using NS-CSHCN for transition research. A systematic review was conducted. Inclusion criteria included use of NS-CSHCN data and transition as an outcome variable. Fourteen studies were included. Ten (71%) studies evaluated a sample of all CSHCN. Ten (71%) articles used all four variables recommended by the Maternal and Child Health Bureau core outcome on transition. Other variables included patient-centered medical home. The NS-CSHCN provides a rich dataset that can be used in transition research addressing transition preparation from the parent perspective. Using the NS-CSHCN, we recommend analyzing all variables related to the Maternal and Child Health Bureau core outcome for transition, variables related to patient-centered medical home, and further analysis of specific health conditions.

How Much Time Do Families Spend on the Health Care of Children with Diabetes?

IntroductionFamily time caring for children with diabetes is an overlooked component of the overall burden of the condition. We document and analyze risk factors for time family members spend providing health care at home and arranging/coordinating health care for children with diabetes.MethodsData for 755 diabetic children and 16,161 non-diabetic children whose chronic conditions required only prescription (Rx) medication were from the 2009–2010 United States National Survey of Children with Special Health Care Needs (NS-CSHCN). We used generalized ordered logistic regressions to estimate adjusted odds ratios (AORs) of time burden by diabetes, insulin use, and stability of the child’s health care needs, controlling for health and socioeconomic status.ResultsNearly one-quarter of diabetic children had family members who spent 11+ h/week providing health care at home, and 8% spent 11+ h/week arranging/coordinating care, compared with 3.3% and 1.9%, respectively, of non-diabetic Rx-only children. Time providing care at home for insulin-using children was concentrated in the higher time categories: AORs for insulin-using diabetic compared to non-diabetic Rx-only children were 4.4 for 1+ h/week compared with <1 h/week, 9.7 for 6+ vs. <6 h, and 12.4 for 11+ vs. <11 h (all P < 0.05); the pattern was less pronounced for non-insulin-using children. AORs for arranging/coordinating care did not vary by time contrast: AOR = 4.2 for insulin-using, 3.0 for non-insulin-using children.ConclusionHealth care providers, school personnel, and policymakers need to work with family members to improve care coordination and identify other ways to reduce family time burdens caring for children with diabetes.Electronic supplementary materialThe online version of this article (doi:10.1007/s13300-016-0181-z) contains supplementary material, which is available to authorized users.

Care coordination, medical complexity, and unmet need for prescription medications among children with special health care needs.

Children with special health care needs (CSHCN) have multiple unmet health care needs including that of prescription medications. The objectives of this study were twofold: 1) to quantify and compare unmet needs for prescription medications for subgroups of CSHCN without and with medical complexity (CMC)-those who have multiple, chronic, and complex medical conditions associated with severe functional limitations and high utilization of health care resources, and 2) to describe its association with receipt of effective care coordination services and level of medical complexity. A secondary data analysis of the 2009/2010 National Survey of CSHCN, a nationally representative telephone survey of parents of CSHCN, was conducted. Logistic regression models were constructed to determine associations between unmet need for prescription medications and medical complexity and care coordination for families of CSHCN, while controlling for demographic variables such as race, insurance, education level, and household income. Analyses accounted for the complex survey design and sampling weights. CMC represented about 3% of CSHCN. CMC parents reported significantly more unmet need for prescription medications and care coordination (4%, 68%), compared to Non-CMC parents (2%, 40%). Greater unmet need for prescription medications was associated with unmet care coordination (adjusted OR 3.81; 95% CI: 2.70-5.40) and greater medical complexity (adjusted OR 2.01; 95% CI: 1.00-4.03). Traditional care coordination is primarily facilitated by nurses and nurse practitioners with little formal training in medication management. However, pharmacists are rarely part of the CSHCN care coordination model. As care delivery models for these children evolve, and given the complexity of and numerous transitions of care for these patients, pharmacists can play an integral role to improve unmet needs for prescription medications.

Capturing Unmet Therapy Need Among Young Children With Developmental Delay Using National Survey Data

ObjectiveEstimates of unmet therapy need based on parent report overlook the unmet needs of children with developmental delay (DD) whose parents do not first recognize a need for therapy. Using national survey, data we: 1) identified children with DD who likely need physical, occupational, or speech therapy services; 2) estimated the prevalence of overall unmet therapy need; and 3) examined factors associated with unrecognized therapy need and parent-reported unmet therapy need. MethodsCriteria for DD were applied to children aged 0 to 4 years using the 2009–2010 National Survey of Children With Special Health Care Needs (NS-CSHCN). Multivariate logistic regression was used to identify factors associated with unrecognized or parent-reported unmet therapy need. ResultsAmong 5349 children with special health care needs aged 0 to 4 years, 50.2% met our inclusion criteria for DD, 21.6% had overall unmet therapy need, 15.4% had unrecognized therapy needs, and 6.2% had parent-reported unmet therapy need. The adjusted odds of unrecognized therapy need were higher among black and Hispanic children, and children from other racial or ethnic groups than among white children (adjusted odds ratio 1.78 [95% confidence interval 1.23–2.57]). The odds of parent-reported unmet therapy need were higher for children lacking special education services. ConclusionsRelying on parent-reported unmet therapy need, without considering children with DD whose therapy needs go unrecognized, likely underestimates overall unmet therapy need among children with DD. Exploring the mechanisms underlying racial, ethnic, and socioeconomic disparities in overall unmet therapy need should facilitate the development of effective interventions aimed at improving therapy access for children with DD.

Risk factors for family time burdens providing and arranging health care for children with special health care needs: Lessons from nonproportional odds models

We identify need, enabling, and predisposing factors for high family time burdens associated with the health care of chronically-ill children, using data from the U.S. 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN), a population-based survey of 40,242 children with special health care needs (CSHCN). We estimate generalized ordered logistic multivariable regressions of time spent (1) providing health care for the child at home, (2) arranging/coordinating health care, and (3) combined time. Factors associated with higher time burdens included child’s functional limitations, severe or unstable health conditions, public health insurance, lack of a medical home, low family income, low adult education, and non-white race. Nonproportional odds models revealed associations between risk factors and time burden that were obscured by binary and standard ordered logistic models. Clinicians and policymakers can use this information to design interventions to alleviate this important family stressor.

Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009–2010

ObjectiveTo report on coverage and adequacy of health insurance for children with special health care needs (CSHCN) in 2009–2010 and assess changes since 2001. MethodsData were from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a random-digit telephone survey with 40,243 (2009–2010) and 38,866 (2001) completed interviews. Consistency and adequacy of insurance was measured by: 1) coverage status, 2) gaps in coverage, 3) coverage of needed services, 4) reasonableness of uncovered costs, and 5) ability to see needed providers, as reported by parents. Bivariate and multivariable analyses were conducted to assess factors associated with adequate insurance coverage in 2009–2010. Unadjusted and adjusted prevalence estimates were examined to identify changes in the type of insurance coverage and the proportion of CSHCN with adequate coverage by insurance type. ResultsThe proportion of CSHCN with private coverage decreased from 64.7% to 50.7% between 2001 and 2009–2010, while public coverage increased from 21.7% to 34.7%; the proportion of CSHCN without any insurance declined from 5.2% to 3.5%. The proportion of CSHCN with adequate coverage varied over time and by insurance type: among privately covered CSHCN, the proportion with adequate coverage declined (62.6% to 59.6%), while among publicly covered CSHCN, the proportion with adequate insurance increased (63.0% to 70.7%). Publicly insured CSHCN experienced improvements in each of the 3 adequacy components. ConclusionsThere has been a continued shift from private to public coverage, which is more affordable, offers benefits that are more likely to meet CSHCN needs, and allowed CSHCN to see necessary providers.

Association Between Altitude and Regional Variation of ADHD in Youth

Objective: The purpose of this study was to evaluate the effect of altitude on rates of ADHD. As decreased dopamine (DA) activity has been reported with ADHD and hypoxia has shown to be associated with increased DA, we hypothesized that states at higher altitudes would have lower rates of ADHD. Method: State estimates from the 2007 National Survey of Children’s Health (NSCH) report and 2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) report were used to extract the percentages of youth ages 4 to 17 diagnosed with ADHD. Results: Both the datasets independently revealed that the prevalence of ADHD decreases with increasing altitude (R2 = .38, p < .001; R2 = .31, p < .001), respectively. This study controlled for potential confounds (e.g., low birth weight, ethnicity, and household size). Conclusion: These findings suggest a need for further investigation into the extent by which altitude may serve as a protective factor for ADHD.