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1.  Profiling Health and Health Related Services for Children with Special Health Care Needs with and without Disabilities 
Academic pediatrics  2011;11(6):508-516.
Objective
To profile and compare the health and health services characteristics for children with special health care needs (CSHCN) with and without disabilities, and to determine factors associated with unmet need.
Methods
Secondary data analysis of the 2005-06 National Survey of Children with Special Health Care Needs was conducted. The socio-demographics, health, and health services of CSHCN with and without disabilities were compared. Multivariable logistic regression was employed to examine factors associated with unmet need for health services.
Results
Children from minority racial and ethnic groups and children living in or near poverty were overrepresented among CSHCN with disabilities compared to other CSHCN. Statistically higher percentages of CSHCN with disabilities had behavioral problems (39.6% vs. 25.2%), anxiety/depressed mood (46.1% vs. 24.0%) and trouble making/keeping friends (38.1% vs. 15.6%) compared to other CSHCN. 32% of CSHCN with disabilities received care in a medical home compared to 51% of other CSHCN. CSHCN with disabilities had higher rates of need and unmet need than other CSHCN for specialty care, therapy services, mental health services, home health, assistive devices, medical supplies and durable medical equipment. The adjusted odds of unmet need for CSHCN with disabilities were 71% higher than for other CSHCN.
Conclusion
CSHCN with disabilities had more severe health conditions and more health services need, but they less commonly received care within a medical home and had more unmet need. These health care inequities should be amenable to policy and health service delivery interventions to improve outcomes for CSHCN with disabilities.
What’s New
CSHCN with disabilities are identified as a distinct group of CSHCN because of their sociodemographic, health and health services characteristics. CSHCN with disabilities had more psychosocial problems and health service needs than other CSHCN. We also document inequities in health services by highlighting the rates of unmet need and low percentages of care within a medical home for CSHCN with disabilities.
doi:10.1016/j.acap.2011.08.004
PMCID: PMC3215793  PMID: 21962936
Children with Special Health Care Needs; Disabilities; Medical Home; Unmet Need
2.  Assessing Systems Quality in a Changing Health Care Environment: The 2009–10 National Survey of Children with Special Health Care Needs 
Maternal and child health journal  2015;19(2):353-361.
To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of children with special health care needs from the 2009–10 National Survey of Children with Special Health Care Needs (NS-CSHCN) were examined to determine the extent to which CSHCN had access to six quality indicators of a well-functioning system of services. Criteria for determining access to each indicator were established and applied to the survey data to estimate the proportion of CSHCN meeting each quality indicator by socio-demographic status and functional limitations. 17.6 % of CSHCN received care consistent with all six quality indicators. Results for each component of the system quality framework ranged from a high of 70.3 % of parents reporting that they shared decision-making with healthcare providers to a low of 40 % of parents reporting receipt of services needed for transition to adult health care. Attainment rates were lower for CSHCN of minority racial and ethnic groups, those residing in households where English was not the primary language, those in lower income households, and those most impacted by their health condition. Only a small proportion of CSHCN receive all identified attributes of a high-quality system of services. Moreover, significant disparities exist whereby those most impacted by their conditions and those in traditionally disadvantaged groups are served least well by the current system. A small proportion of CSHCN appear to remain essentially outside of the system, having met few if any of the elements studied.
doi:10.1007/s10995-014-1517-9
PMCID: PMC4936897  PMID: 24912943
Children with special health care needs; Health care quality; Systems of care; Access; Disparities
3.  Disparities in Health Care Quality Indicators among US Children with Special Health Care Needs According to Household Language Use 
Background:
Lower health care utilization and less favorable health outcomes have been demonstrated in children from Non-English Primary Language households (NEPL) in previous studies. This study examines prevalence of health care quality indicators among US children with special health care needs (CSHCN) and their association with household language use.
Methods:
We used data from the 2009-2010 National Survey of Children with Special Health Care Needs, restricted to an analytic sample of 40,242 children. Logistic regression models were used to examine the effects of primary household language on the attainment of the 6 health care quality indicators for CSHCN.
Results:
Compared to CSHCN from English primary language households (EPL), CSHCN from NEPL households had 31% higher odds of not feeling like partners in health care decision-making. They had 67% higher odds of lacking care through a medical home and 42% higher odds of reporting inadequate health insurance. NEPL children had 32% higher odds of not receiving early and continuous screening for special health care needs. NEPL youths had 69% higher odds of not receiving services for transition to adulthood. Minority race/ethnicity, lower income and families other than two biological parents all conferred additional risks to not attaining quality indicators. Publicly insured or uninsured CSHCN were also at higher risk.
Conclusions and Global Health Implications:
Our study provides compelling evidence that significant disparities exist for CSHCN by primary household language status across all health care quality indicators. Establishment of effective surveillance systems and targeting of outreach programs in both developed and developing countries may lead to improved understanding of health care needs and quality of services and reduction of health disparities for this underserved population.
PMCID: PMC4948155  PMID: 27621998
Children with Special Health Care Needs; Household Language Use; Limited English Proficiency; Socioeconomic Status; Race/ethnicity; Health Care Quality
4.  Family Impacts among Children with Autism Spectrum Disorder: The Role of Health Care Quality 
Academic pediatrics  2014;14(4):398-407.
Objectives
To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN+ASD), CSHCN with functional limitations (CSHCN+FL), and CSHCN lacking these conditions (other CSHCN). To test whether high health care quality was associated with reduced family impacts among CSHCN+ASD.
Methods
Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN+ASD, 6505 CSHCN+FL, and 28 296 other CSHCN. Weighted multivariate logistic regression analyses examined six age-relevant, federally-defined health care quality indicators and five family financial and employment impact indicators. Two composite measures were additionally used: (1) receipt of care that met all age-relevant quality indicators; and (2) had ≥ two of the five adverse family impacts.
Results
Across all health care quality indicators CSHCN+ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN+ASD had worse health care quality than other CSHCN, including CSHCN+FL. CSHCN+ASD also had high rates of adverse family impact, with over half experiencing two or more adverse impacts. Rates of adverse family impact were higher in CSHCN+ASD than other CSHCN, including CSHCN+FL. Among CSHCN+ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN+ASD whose health care did not meet federal quality standards.
Conclusions
CSHCN+ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN+FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN+ASD.
doi:10.1016/j.acap.2014.03.011
PMCID: PMC4076703  PMID: 24976352
autism spectrum disorder; disabled children; family health; family burden; financial burden; quality of health care; delivery of health care; integrated
5.  Does private insurance adequately protect families of children with mental health disorders? 
Pediatrics  2009;124(Suppl 4):S399-S406.
Objective
Although private insurance typically covers many health care costs, the challenges faced by families caring for a sick child are substantial. These challenges may be more severe for CSHCN with mental illnesses than for other special needs children. Our objective is to determine whether families of privately insured children needing mental health care face different burdens than other families in caring for their children.
Patients and Methods
We use the 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) to study privately insured children ages 6–17. We compare CSHCN with mental health care needs (N=4,918) to three groups: children with no SHCN (N=2,346), CSHCN with no mental health care needs (N=16,250), and CSHCN with no mental health care need but a need for other specialty services (N=7,902). The latter group is a subset of CSHCN with no mental health care need. We use weighted logistic regression and study outcomes across four domains: financial burden, health plan experiences, labor market and time effects, and parent experience with services.
Results
We find that families of children with mental health care needs face significantly greater financial barriers, have more negative health plan experiences, and are more likely to reduce their labor market participation to care for their child than other families.
Conclusions
Families of privately insured CSHCN needing mental health care face a higher burden than other families in caring for their children. Policies are needed to aid these families in obtaining affordable, high quality care for their children.
doi:10.1542/peds.2009-1255K
PMCID: PMC2805472  PMID: 19948605
mental health; health care services; CSHCN
6.  Insurance Coverage and Financial Burden for Families of Children with Special Health Care Needs 
Objective
To examine the role of insurance coverage in protecting families of children with special health care needs (CSHCN) from the financial burden associated with care.
Methods
Data from the 2001 National Survey of Children with Special Health Care Needs were analyzed. We built two multivariate regression models using “work loss/cut back” and “experiencing financial problems” as the dependent variables and insurance status as the primary independent variable of interest while adjusting for income, race/ethnicity, functional limitation/severity, and other sociodemographic predictors.
Results
Approximately 29.9 % of CSHCN live in families where their condition led parents to report cutting back on work or stopping work completely. Families of 20.9 % of CSHCN reported experiencing financial difficulties due to the child’s condition. Insurance coverage significantly reduced the likelihood of families experiencing financial problems at every income level. The proportion of families experiencing financial problems was reduced from 35.7 to 23.0 % for the poor and 44.9 to 24.5 % for low-income families with continuous insurance coverage (p<0.01 for both comparisons). Similarly, the proportion of parents having to cut back or stop work was reduced from 42.8 to 35.9 % for the poor (p<0.05) and 43.5 to 33.9 % for low-income families (p<0.01).
Conclusions
Continuous health insurance coverage provides protection from financial burden and hardship for families of CSHCN in all income groups. This evidence is supportive of policies designed to promote universal coverage for CSHCN. However, many poor and low-income families continue to experience work loss and financial problems despite insurance coverage. Hence, health insurance should not be viewed as a solution in itself, but instead as one element of a comprehensive strategy to provide financial safety for families with CSHCN.
doi:10.1016/j.ambp.2006.04.009
PMCID: PMC1557643  PMID: 16843251
Children with Special Health Care Needs(CSHCN); health insurance; Medicaid; poverty status; National Survey of CSHCN; CSHCN, children with special health care needs; SCHIP, State Children’s Health Insurance
7.  DENTAL CARE AND CHILDREN WITH SPECIAL HEALTH CARE NEEDS: A POPULATION-BASED PERSPECTIVE 
Academic pediatrics  2009;9(6):420-426.
This paper grew out of a project reviewing progress in children's oral health since the Surgeon General's Report (SGR) on Oral Health. It includes a summary of advances in national surveillance of children with special health care needs (CSHCN), and presents more recent data on unmet dental care need among CSHCN. To that end, we used the 2006-National Survey of CSHCN to determine the prevalence of unmet dental care need among CSHCN and to compare this within subgroups of CSHCN, as well as to children without special health care needs, and to results from the previous iteration of this survey.
We found that dental care remains the most frequently cited unmet health need for CSHCN. More CSHCN had unmet need for non-preventive than preventive dental care. CSHCN who are teens, poorer, uninsured, had insurance lapses, or more severely affected by their condition had higher adjusted odds of unmet dental care needs. CSHCN who were both low-income and severely affected had 13.4 times the adjusted odds of unmet dental care need.
In summary, CSHCN are more likely to be insured and to receive preventive dental care at equal or higher rates than children without SHCN. Nevertheless, CSHCN, particularly lower income and severely affected, are more likely to report unmet dental care need compared to unaffected children. Despite advances in knowledge about dental care among CSHCN, unanswered questions remain. We provide recommendations towards obtaining additional data and facilitating dental care access for this vulnerable population.
doi:10.1016/j.acap.2009.09.005
PMCID: PMC2787477  PMID: 19945077
Dental Care; Children; Special Health Care Needs; Oral health; Disability
8.  Participation of Children with Special Health Care Needs in School and the Community 
Academic pediatrics  2012;12(4):326-334.
Objective
Children with special health care needs (CSHCN) are at risk for decreased participation which can negatively impact their lives. The objectives of this study were to document the presence of participation restrictions for CSHCN compared to other children and to determine how personal and environmental factors are associated with participation restrictions for CSHCN.
Methods
The 2007 National Survey of Children’s Health (NSCH) was analyzed to evaluate two participation outcomes for children aged 6–17 years: school attendance and participation in organized activities, and two participation outcomes for children aged 12–17 years: working for pay and volunteering. Adjusted prevalences of participation restrictions were calculated for children with and without special health care needs. Logistic regression was used to identify factors independently associated with participation restrictions for CSHCN.
Results
After adjustment for sociodemographic characteristics, a larger proportion of CSHCN (27.9%) reported missing more than 5 days of school than other children (15.1%). In contrast, no differences were found for participation in organized activities, working for pay or volunteering. CSHCN with functional limitations were more likely to experience all four types of participation restrictions compared to other CSHCN and non-CSHCN. For CSHCN, the odds of certain participation restrictions were higher for those with functional limitations, in fair/poor health, with depressed mood, living at or near the federal poverty level and living in homes not headed by two parents.
Conclusions
CSHCN with functional limitations and those with worse health status are at elevated risk of experiencing participation restrictions than other children. Social disadvantage furthers the likelihood that CSHCN will experience participation restrictions.
doi:10.1016/j.acap.2012.03.004
PMCID: PMC4976484  PMID: 22683160
Children with special health care needs; participation; functional limitations; disability; poverty
9.  Two-Year Impact of the Alternative Quality Contract on Pediatric Health Care Quality and Spending 
Pediatrics  2014;133(1):96-104.
OBJECTIVE:
To examine the 2-year effect of Blue Cross Blue Shield of Massachusetts’ global budget arrangement, the Alternative Quality Contract (AQC), on pediatric quality and spending for children with special health care needs (CSHCN) and non-CSHCN.
METHODS:
Using a difference-in-differences approach, we compared quality and spending trends for 126 975 unique 0- to 21-year-olds receiving care from AQC groups with 415 331 propensity-matched patients receiving care from non-AQC groups; 23% of enrollees were CSHCN. We compared quality and spending pre (2006–2008) and post (2009–2010) AQC implementation, adjusting analyses for age, gender, health risk score, and secular trends. Pediatric outcome measures included 4 preventive and 2 acute care measures tied to pay-for-performance (P4P), 3 asthma and 2 attention-deficit/hyperactivity disorder quality measures not tied to P4P, and average total annual medical spending.
RESULTS:
During the first 2 years of the AQC, pediatric care quality tied to P4P increased by +1.8% for CSHCN (P < .001) and +1.2% for non-CSHCN (P < .001) for AQC versus non-AQC groups; quality measures not tied to P4P showed no significant changes. Average total annual medical spending was ∼5 times greater for CSHCN than non-CSHCN; there was no significant impact of the AQC on spending trends for children.
CONCLUSIONS:
During the first 2 years of the contract, the AQC had a small but significant positive effect on pediatric preventive care quality tied to P4P; this effect was greater for CSHCN than non-CSHCN. However, it did not significantly influence (positively or negatively) CSHCN measures not tied to P4P or affect per capita spending for either group.
doi:10.1542/peds.2012-3440
PMCID: PMC4079291  PMID: 24366988
pay-for-performance; capitation; payment; pediatrics; children with special health care needs; preventive care; acute care quality; chronic disease care quality; asthma; ADHD
10.  Caregiver burden and preventive dental care use for U.S. children with special health care needs: a stratified analysis based on functional limitation 
Maternal and child health journal  2014;18(4):882-890.
Objectives
To evaluate the association between caregiver burden and preventive dental care use for children with special health care needs (CSHCN) and assess if caregiver burden explains the relationship between child- and family-level characteristics and preventive dental care use.
Methods
Samples of U.S. CSHCN ages 3–17 years with a functional limitation (n=7,559) and those without (n=26,345) were derived from the 2005–2006 National Survey of CSHCN. We generated structural equation models, stratified by functional limitation, to describe the relationships between caregiver burden and preventive dental utilization. We measured caregiver burden using six items on whether the child's health condition impacted work, time spent on health management, and finances.
Results
About 80.9% of CSHCN used preventive dental care. Higher levels of caregiver burden were associated with significantly lower odds of preventive dental care use for CHSCN with a functional limitation (β=−0.06; P<0.001) and those without (β=−0.07; P<0.001). For CSHCN with a functional limitation, family poverty and being uninsured were significantly associated with greater caregiver burden and less preventive dental use. Findings were similar for CSHCN without a functional limitation, except that lower caregiver education was also associated with greater caregiver burden and less preventive dental care use.
Conclusions
Caregiver burden is potential barrier to preventive dental care use for CSHCN and explains the relationship between child- and family-level characteristics and preventive dental care use. Interventions to improve the oral health of CSHCN should include strategies to reduce caregiver burden, especially within socioeconomically vulnerable families.
doi:10.1007/s10995-013-1314-x
PMCID: PMC3815970  PMID: 23793537
children with special health care needs; caregiver burden; preventive dental care use; oral health disparities; structural equation models
11.  New opportunities, new approaches: serving children with special health care needs under SCHIP. 
Health Services Research  2000;35(5 Pt 3):102-111.
OBJECTIVE: To identify models for caring for children with special health care needs (CSHCN) under the State Children's Health insurance Program (SCHIP) and to analyze the strengths and weaknesses of each. DATA SOURCE: Site visits in five study States conducted in late 1999. STUDY DESIGN: Approximately 12 to 15 interviews were conducted in each site with state and local-level policymakers, program administrators, providers, and families. DATA COLLECTION: Standard protocols were used across sites to explore a range of key policy variables including eligibility, enrollment , identification, and referral of CSHCN; benefits; service delivery systems; payment mechanisms; and quality assurance and monitoring strategies. PRINCIPAL FINDINGS. Each of the study States' approaches to serving CSHCN represents one of four models: a mainstream approach , a wrap-around model, a service carve out , or a specialized system of care. Special provisions designed to enhance the coverage and accessibility of services beyond those extended to children generally can help to ensure that CSHCN enrolled in SCHIP receive comprehensive, coordinated care. CONCLUSIONS: The mainstream approach , wh ile aimed at providing comprehensive care for all children , could not identify CSHCN or monitor their care. Wrap-around models, while offering rich benefits to CSHCN, rely on providers to identify eligible children , with few referrals reported to date. Service carve outs preserve long-standing specialty systems of care for CSH CN but create challenges for care coordination . Specialized systems of care present challenges for capitation but appear to offer the most promise for comprehensive, coordinated care to CSHCN.
PMCID: PMC1383598  PMID: 16148955
12.  Variation in Child Health Care Utilization by Medical Complexity 
Objectives
Children with medical complexity (CMC) have multiple specialty need, technology dependence, and high health care utilization. The objective of this study is to profile types of pediatric health care utilization and costs by increasing levels of medical complexity.
Methods
Cross-sectional study of the 2007, 2008 and 2009 Full-Year Data Sets from the Medical Expenditure Panel Survey. Medical complexity was defined by a higher number of positive items from the five question Children with Special Health Care Needs (CSHCN) Screener. CMC were defined by ≥4 positive screener items. Outcomes included the number of inpatient, outpatient, and emergency department visits, associated costs and diagnoses, and reported satisfaction. ICD-9 codes were grouped by Clinical Classifications Software.
Results
Of 27,755 total study subjects ≤17 years, 4,851 had special needs and 541 were CMC. Older age, male gender, white/non-Hispanic race/ethnicity, and public insurance were all associated with medical complexity (all p<.001). CMC had an annual mean of 19 annual outpatient visits ($616) and 0.26 inpatient visits ($3,308), with other significant cost drivers including home health ($2,957) and prescriptions ($2,182). The most common reasons for non-CSHCN and less-complex CSHCN outpatient visits were viral illnesses, while the main reasons for CMC visits were for mental health. Compared to families without CSHCN, those with CMC have, on average, lower satisfaction with health care (8.4 versus 8.9 out of 10, p<.001).
Conclusion
Health care models for CMC should account for mental health conditions that may be driving high numbers of outpatient encounters.
doi:10.1007/s10995-014-1493-0
PMCID: PMC4201636  PMID: 24740726
children with special health care needs; complex care; complex chronic conditions; health care disparities; medical home
13.  Online Schools and Children With Special Health and Educational Needs: Comparison With Performance in Traditional Schools 
Background
In the United States, primary and secondary online schools are institutions that deliver online curricula for children enrolled in kindergarten through 12th grade (K-12). These institutions commonly provide opportunities for online instruction in conjunction with local schools for students who may need remediation, have advanced needs, encounter unqualified local instructors, or experience scheduling conflicts. Internet-based online schooling may potentially help children from populations known to have educational and health disadvantages, such as those from certain racial or ethnic backgrounds, those of low socioeconomic status, and children with special health care needs (CSHCN).
Objective
To describe the basic and applied demographics of US online-school users and to compare student achievement in traditional versus online schooling environments.
Methods
We performed a brief parental survey in three states examining basic demographics and educational history of the child and parents, the child’s health status as measured by the CSHCN Screener, and their experiences and educational achievement with online schools and class(es). Results were compared with state public-school demographics and statistical analyses controlled for state-specific independence.
Results
We analyzed responses from 1971 parents with a response rate of 14.7% (1971/13,384). Parents of online-school participants were more likely to report having a bachelor’s degree or higher than were parents of students statewide in traditional schools, and more of their children were white and female. Most notably, the prevalence of CSHCN was high (476/1971, 24.6%) in online schooling. Children who were male, black, or had special health care needs reported significantly lower grades in both traditional and online schools. However, when we controlled for age, gender, race, and parental education, parents of CSHCN or black children reported significantly lower grades in online than in traditional schooling (adjusted odds ratio [aOR] 1.45, 95% confidence interval [CI] 1.29–1.62 for CSHCN, P < .001; aOR 2.73, 95% CI 2.11–3.53 for black children, P < .001.) In contrast, parents with a bachelor’s degree or higher reported significantly higher online-school grades than traditional-school grades for their children (aOR 1.45, 95% CI 1.15–1.82, P < .001).
Conclusions
The demographics of children attending online schools do not mirror those of the state-specific school populations. CSHCN seem to opt into online schools at a higher rate. While parents report equivalent educational achievement in online and traditional classrooms, controlling for known achievement risks suggests that CSHCN and black children have lower performance in online than in traditional schools. Given the millions of students now in online schools, future studies must test whether direct assistance in online schools, such as taking individualized education plans into consideration, will narrow known disparities in educational success. Only then can online schools emerge as a true educational alternative for at-risk populations.
doi:10.2196/jmir.1947
PMCID: PMC3384422  PMID: 22547538
Virtual schooling; schools; K-12; children with special health care needs; online learning; education, adolescent health services, special education
14.  Family Income Gradients in the Health and Health Care Access of US Children 
Maternal and Child Health Journal  2009;14(3):332-342.
This study sought to examine the shape and magnitude of family income gradients in US children’s health, access to care, and use of services. We analyzed cross-sectional data from the 2003 National Survey of Children’s Health, a telephone survey of 102,353 parents of children aged 0–17 years. Associations between family income [Below 100% Federal Poverty Level (FPL), 100–199% FPL, 200–299% FPL, 300–399% FPL, 400% FPL or Greater] and a set of 32 health and health care indicators were examined using linear polynomial testing and multivariate logistic regression. The percentage of children in better health increased with family income for 15 health outcomes. In multivariate logistic regression models that controlled for health insurance coverage and socio-demographic confounders, odds ratios >2 comparing the lowest to the highest income groups were noted for health conditions across both physical and developmental domains (diabetes, headaches, ear infections, learning disabilities, behavior/conduct problems, speech problems). Parent-reported global child health status, activity limitation, and oral health status showed steeper gradients than specific chronic and acute conditions. Ten measures of health care access and utilization were associated with family income in multivariate logistic regression models. Income gradients are pervasive across many health indicators at an early age. Social and health policy interventions are needed to address the multitude of factors that can affect children’s health and initiate disparities in development.
doi:10.1007/s10995-009-0477-y
PMCID: PMC2862175  PMID: 19499315
Income gradients; Health outcomes; Access; Children
15.  Do State Parity Laws Reduce the Financial Burden on Families of Children with Mental Health Care Needs? 
Health Services Research  2007;42(3 Pt 1):1061-1084.
Objective
To study the financial impact of state parity laws on families of children in need of mental health services.
Data Source
Privately insured families in the 2000 State and Local Area Integrated Telephone Survey National Survey of Children with Special Health Care Needs (CSHCN) (N=38,856).
Study Design
We examine whether state parity laws reduce the financial burden on families of children with mental health conditions. We use instrumental variable estimation controlling for detailed information on a child's health and functional impairment. We compare those in parity and nonparity states and those needing mental health care with other CSHCN.
Principle Findings
Multivariate regression results indicate that living in a parity state significantly reduced the financial burden on families of children with mental health care needs. Specifically, the likelihood of a child's annual out-of-pocket (OOP) health care spending exceeding $1,000 was significantly lower among families of children needing mental health care living in parity states compared with those in nonparity states. Families with children needing mental health care in parity states were also more likely to view OOP spending as reasonable compared with those in nonparity states. Likewise, living in a parity state significantly lowered the likelihood of a family reporting that a child's health needs caused financial problems. The likelihood of reports that additional income was needed to finance a child's care was also lower among families with mentally ill children living in parity states. However, we detect no significant difference among residents of parity and nonparity states in receipt of needed mental health care.
Conclusion
These results indicate that state parity laws are providing important economic benefits to families of mentally ill children undetected in prior research.
doi:10.1111/j.1475-6773.2006.00650.x
PMCID: PMC1955255  PMID: 17489904
Parity; mental health; CSHCN; economic burden
16.  Parent Health Beliefs, Social Determinants of Health, and Child Health Services Utilization among US School-Age Children with Autism 
Objective
Substantial variation exists in ASD care by race, ethnicity, and socioeconomic status; however, the role of parent health beliefs in this variation is poorly understood. Study goals were to (1) examine variation in parent beliefs about ASD prognosis and treatment according to social determinants of health (SDH) and (2) assess whether this variation was associated with variable health services utilization, among 1420 children with special health care needs (CSHCN) having autism spectrum disorder (ASD).
Methods
We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009/10 National Survey of Children with Special Health Care Needs. Bivariate and multivariate analyses assessed variation in parent beliefs according to race/ethnicity, household income, and parent educational attainment. Further analyses assessed whether variation in beliefs was associated with use of psychotropic medication, traditional therapy, or complementary/alternative therapy for ASD.
Results
Parents of lower educational attainment or who had lower income were more likely to think that their child’s condition was a mystery. Near-poor families were less likely to feel they had the power to change the child’s condition. Parents of minority children were more likely than white children to view their child’s condition as temporary. However, these differences in beliefs only had modest associations with variation in use of the health services analyzed.
Conclusions
Some SDH-related variation exists in health beliefs among parents of children with ASD, but these differences may not be the main factors accounting for ASD health care disparities.
doi:10.1097/DBP.0000000000000136
PMCID: PMC4382377  PMID: 25741947
autism spectrum disorder; health services; health beliefs; healthcare disparities; social determinants of health
17.  Unmet needs for dental care in children with special health care needs 
Objective: The unmet need for dental care is one of the greatest public health problems facing U.S. children. This issue is particularly concerning for children with special health care needs (CSHCN), who experience higher prevalence of unmet dental care needs. The primary purpose of this study was to investigate regional differences in unmet dental care needs for CSHCN. Using the Social Ecological Model as a framework, additional variables were analyzed for regional differences. It was hypothesized that (H1) unmet dental care needs would be high in the CSHCN population, (H2) there would be regional differences in unmet dental care needs in CSHCN, and (H3) there would be differences in specific individual, interpersonal (family), community (state), and policy level factors by region. Methods: Data were obtained from the 2009–2010 National Survey of CSHCN. SPSS was used for data management and analysis. Results: Each of the study hypotheses was supported for the sample of 40,242 CSHCN. The West region was more likely to have more unmet needs for preventive and specialized dental care in CSHCN than the reference region (Northeast). The South region followed the West region in unmet dental care needs. Statistically significant differences in individual, interpersonal (family), community (state) and policy factors were found by region. Conclusion: Further research is recommended. Effective strategies that include policy to address unmet dental care needs at multiple levels of intervention are suggested.
Highlights
•Unmet dental care needs are high in children with special healthcare needs (CSHCN).•Regional differences were found in unmet needs for dental care in 40,242 CSHCN.•Unmet needs were higher in regions with greater health professional shortage areas.•Unmet needs were higher in regions with greater poverty.•Individual, family, community (state), and policy level factors differed by region.
doi:10.1016/j.pmedr.2015.11.013
PMCID: PMC4733065  PMID: 26844190
Dental; Oral health; Children; Unmet needs; Special health care needs; Region
18.  Utilization of specialty mental health care among persons with severe mental illness: the roles of demographics, need, insurance, and risk. 
Health Services Research  2000;35(1 Pt 2):277-292.
OBJECTIVE: To examine the sociodemographic, need, risk, and insurance characteristics of persons with severe mental illness and the importance of these characteristics for predicting specialty mental health utilization among this group. DATA SOURCE: The Healthcare for Communities survey, a national study that tracks alcohol, drug, and mental health services utilization. Data come from a telephone survey of adults from 60 communities across the United States, and from a supplemental geographically dispersed sample. STUDY DESIGN: Respondents were categorized as having a severe mental disorder, other mental disorder, or no measured mental disorder. Differences among groups in sociodemographics (gender, marital status, race, education, and income), insurance coverage, need for mental health care (symptoms and perceived need), and risk indicators (suicide ideation, criminal involvement, and aggressive behavior) are examined. Measures of service use for mental health care include emergency room, inpatient, and specialty outpatient care. The importance of sociodemographics, need, insurance status, and risk indicators for specialty mental health care utilization are examined through logistic regression. PRINCIPAL FINDINGS: The severely mentally ill in this study are disproportionately African American, unmarried, male, less educated, and have lower family incomes than those with other disorders and those with no measured mental disorders. In a 12-month period almost three-fifths of persons with severe mental illness did not receive specialty mental health care. One in five persons with severe mental illness are uninsured, and Medicare or Medicaid insures 37 percent. Persons covered by these public programs are over six times more likely to have access to specialty care than the uninsured are. Involvement in the criminal justice system also increases the probability that a person will receive care by a factor of about four, independent of level of need. The average number of outpatient visits for specialty care varies little across type of disorder, and the median number of visits (ten) is equivalent for those with a severe mental illness and those with other disorders. CONCLUSIONS: Persons with severe mental illness have a high level of economic and social disadvantage. Barriers to care, including lack of insurance, are substantial and many do not receive specialty care. Public insurance programs are the major points of leverage for improving access, and policy interventions should be targeted to these programs. Problems of adequate care for the severely mentally ill may be exacerbated by the managed care trend to reductions in intensity of treatment.
Images
PMCID: PMC1089101  PMID: 10778815
19.  Financial and Nonfinancial Burden Among Families of CSHCN: Changes Between 2001 and 2009–2010 
Academic pediatrics  2014;14(1):92-100.
Objective
We use the latest data to explore multiple dimensions of financial burden among children with special health care needs (CSHCN) and their families in 2009–2010 and changes since 2001.
Methods
Five burden indicators were assessed using the 2001 and 2009–2010 National Surveys of CSHCN: past-year health-related out-of-pocket expenses of ≥$1,000 or ≥3% of household income; perceived financial problems; changes in family employment; and >10 hours of weekly care provision/coordination. Unadjusted and adjusted prevalence estimates were used to assess burden in 2009–2010 and calculate absolute and relative measures of change since 2001. Prevalence rate ratios for each burden type in 2009–2010 compared to 2001 were estimated by logistic regression.
Results
Nearly half of CSHCN and their families experienced some form of burden in 2009–2010. The percentage of CSHCN living in families that paid ≥$1,000 or ≥3% of household income out of pocket for health care rose 120% and 35%, respectively, between 2001 and 2009–2010, while the prevalence of caregiving and employment burdens declined. Relative to 2001, in 2009–2010, CSHCN who were privately insured or least affected by their conditions were 1.7 times as likely to live in families that paid ≥3% of household income out of pocket, while publicly insured children were 20% less likely to do so and those most severely affected were 12% more likely to do so.
Conclusions
Over the past decade, increases in financial burden and declines in employment and caregiving burdens were observed for CSHCN families. Public insurance expansions may have buffered increases in financial burden, yet disparities persist.
doi:10.1016/j.acap.2013.10.001
PMCID: PMC4930276  PMID: 24369874
children with special health care needs; family burden; financial burden; trends
20.  The importance of examining movements within the US health care system: sequential logit modeling 
Background
Utilization of specialty care may not be a discrete, isolated behavior but rather, a behavior of sequential movements within the health care system. Although patients may often visit their primary care physician and receive a referral before utilizing specialty care, prior studies have underestimated the importance of accounting for these sequential movements.
Methods
The sample included 6,772 adults aged 18 years and older who participated in the 2001 Survey on Disparities in Quality of Care, sponsored by the Commonwealth Fund. A sequential logit model was used to account for movement in all stages of utilization: use of any health services (i.e., first stage), having a perceived need for specialty care (i.e., second stage), and utilization of specialty care (i.e., third stage). In the sequential logit model, all stages are nested within the previous stage.
Results
Gender, race/ethnicity, education and poor health had significant explanatory effects with regard to use of any health services and having a perceived need for specialty care, however racial/ethnic, gender, and educational disparities were not present in utilization of specialty care. After controlling for use of any health services and having a perceived need for specialty care, inability to pay for specialty care via income (AOR = 1.334, CI = 1.10 to 1.62) or health insurance (unstable insurance: AOR = 0.26, CI = 0.14 to 0.48; no insurance: AOR = 0.12, CI = 0.07 to 0.20) were significant barriers to utilization of specialty care.
Conclusions
Use of a sequential logit model to examine utilization of specialty care resulted in a detailed representation of utilization behaviors and patient characteristics that impact these behaviors at all stages within the health care system. After controlling for sequential movements within the health care system, the biggest barrier to utilizing specialty care is the inability to pay, while racial, gender, and educational disparities diminish to non-significance. Findings from this study represent how Americans use the health care system and more precisely reveals the disparities and inequalities in the U.S. health care system.
doi:10.1186/1472-6963-10-269
PMCID: PMC2944276  PMID: 20831805
21.  Differential item functioning in quality of life measure between children with and without special health care needs 
Objectives
Limited studies consider the effect of differential item functioning (DIF) on health-related quality of life (HRQOL) comparisons between ill and health children. The objective is to assess DIF and compare HRQOL between children with special health care needs (CSHCN) and children without needs.
Methods
Data were collected from 1195 families of children enrolled in Florida’s public insurance programs. HRQOL was measured using physical, emotional, social, and school functioning of the PedsQL. We identified CSHCN using the CSHCN Screener and assessed DIF related to CSHCN using a multiple group-multiple indicator-multiple cause (MG-MIMIC) method. We assessed the impact of DIF by examining expected item/test scores and item/test information function. We tested the discrepancy between underlying HRQOL scores of both groups before and after DIF calibration (allowing parameters of DIF items to be different and DIF-free items to be the same across both groups).
Results
Two (25%) and 3 items (60%) of physical and school functioning, respectively, were identified with non-uniform DIF, and two items (40%) of social functioning were identified with uniform DIF. Expected item/test scores and item/test information function suggest the impact of DIF is minimal. Before DIF calibration, HRQOL in CSHCN was more impaired than children without needs (effect size −1.04, − 0.74, −0.96, and −0.98 for physical, emotional, social and school functioning, respectively). After DIF calibration, the discrepancy was increased slightly.
Conclusions
Although 30% of items in the PedsQL were identified with DIF related to CSHCN and children without needs, the impact of DIF is minimal.
doi:10.1016/j.jval.2011.03.004
PMCID: PMC3173710  PMID: 21914509
Children; differential item functioning; health-related quality of life; item response theory
22.  Identifying Children with Special Health Care Needs in the National Health Interview Survey: A New Resource for Policy Analysis 
Health Services Research  2004;39(1):53-72.
Objective
To test the feasibility of using the National Health Interview Survey (NHIS) to identify children with chronic illness through a noncategorical approach, as exemplified by the Children with Special Health Care Needs (CSHCN) screener. The ability to use the NHIS to identify CSHCN will permit analyses of the effects of welfare reform and public insurance eligibility expansions during the late 1990s on CSHCN.
Data Sources
The NHIS from 1997, 1999, and 2000. The NHIS is an ongoing household survey representative of the civilian, noninstitutionalized population of the United States.
Study Design
Survey items were selected from the NHIS and thresholds designated to replicate the content and logic of the CSHCN screener. The screener asks explicit questions concerning an elevated need for, or use of health care services, and about limitations in activity, both caused by a chronic health condition. The algorithm created was applied to the pooled 1999–2000 NHIS to generate national prevalence estimates. Multivariate logistic regression was estimated to determine the effect of having particular demographic characteristics on the likelihood of being identified as CSHCN. Log odds ratios were compared to those from earlier NHIS-based estimates and from a pretest of the CSHCN screener.
Principal Findings
An estimated 12 percent of noninstitutionalized children aged 0 through 17 have a chronic condition that results in elevated service use or limitations in normal activity. This estimate is sensitive to inclusion of children with a broader array of less serious or shorter-term conditions. The estimated effects of child characteristics on the likelihood of being identified as having special health needs are similar but not identical to other algorithms that have been used to identify CSHCN.
Conclusions
It is feasible to use existing questions in the NHIS to identify a population of CSHCN that is substantially similar to children identified through other algorithms or through use of a screening instrument imbedded in a household survey. The availability of this algorithm will permit use of the NHIS for important analyses of the effects of welfare reform and public insurance expansions on children with special health care needs.
doi:10.1111/j.1475-6773.2004.00215.x
PMCID: PMC1360994  PMID: 14965077
Children; chronic illness; measurement; CSHCN screener
23.  Socioeconomic Inequalities in Lung Cancer Treatment: Systematic Review and Meta-Analysis 
PLoS Medicine  2013;10(2):e1001376.
In a systematic review and meta-analysis, Lynne Forrest and colleagues find that patients with lung cancer who are more socioeconomically deprived are less likely to receive surgical treatment, chemotherapy, or any type of treatment combined, compared with patients who are more socioeconomically well off, regardless of cancer stage or type of health care system.
Background
Intervention-generated inequalities are unintended variations in outcome that result from the organisation and delivery of health interventions. Socioeconomic inequalities in treatment may occur for some common cancers. Although the incidence and outcome of lung cancer varies with socioeconomic position (SEP), it is not known whether socioeconomic inequalities in treatment occur and how these might affect mortality. We conducted a systematic review and meta-analysis of existing research on socioeconomic inequalities in receipt of treatment for lung cancer.
Methods and Findings
MEDLINE, EMBASE, and Scopus were searched up to September 2012 for cohort studies of participants with a primary diagnosis of lung cancer (ICD10 C33 or C34), where the outcome was receipt of treatment (rates or odds of receiving treatment) and where the outcome was reported by a measure of SEP. Forty-six papers met the inclusion criteria, and 23 of these papers were included in meta-analysis. Socioeconomic inequalities in receipt of lung cancer treatment were observed. Lower SEP was associated with a reduced likelihood of receiving any treatment (odds ratio [OR] = 0.79 [95% CI 0.73 to 0.86], p<0.001), surgery (OR = 0.68 [CI 0.63 to 0.75], p<0.001) and chemotherapy (OR = 0.82 [95% CI 0.72 to 0.93], p = 0.003), but not radiotherapy (OR = 0.99 [95% CI 0.86 to 1.14], p = 0.89), for lung cancer. The association remained when stage was taken into account for receipt of surgery, and was found in both universal and non-universal health care systems.
Conclusions
Patients with lung cancer living in more socioeconomically deprived circumstances are less likely to receive any type of treatment, surgery, and chemotherapy. These inequalities cannot be accounted for by socioeconomic differences in stage at presentation or by differences in health care system. Further investigation is required to determine the patient, tumour, clinician, and system factors that may contribute to socioeconomic inequalities in receipt of lung cancer treatment.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Lung cancer is the most commonly occurring cancer worldwide and the commonest cause of cancer-related death. Like all cancers, lung cancer occurs when cells begin to grow uncontrollably because of changes in their genes. The most common trigger for these changes in lung cancer is exposure to cigarette smoke. Most cases of lung cancer are non-small cell lung cancer, the treatment for which depends on the “stage” of the disease when it is detected. Stage I tumors, which are confined to the lung, can be removed surgically. Stage II tumors, which have spread to nearby lymph nodes, are usually treated with surgery plus chemotherapy or radiotherapy. For more advanced tumors, which have spread throughout the chest (stage III) or throughout the body (stage IV), surgery generally does not help to slow tumor growth and the cancer is treated with chemotherapy and radiotherapy. Small cell lung cancer, the other main type of lung cancer, is nearly always treated with chemotherapy and radiotherapy but sometimes with surgery as well. Overall, because most lung cancers are not detected until they are quite advanced, less than 10% of people diagnosed with lung cancer survive for 5 years.
Why Was This Study Done?
As with many other cancers, socioeconomic inequalities have been reported for both the incidence of and the survival from lung cancer in several countries. It is thought that the incidence of lung cancer is higher among people of lower socioeconomic position than among wealthier people, in part because smoking rates are higher in poorer populations. Similarly, it has been suggested that survival is worse among poorer people because they tend to present with more advanced disease, which has a worse prognosis (predicted outcome) than early disease. But do socioeconomic inequalities in treatment exist for lung cancer and, if they do, could these inequalities contribute to the poor survival rates among populations of lower socioeconomic position? In this systematic review and meta-analysis, the researchers investigate the first of these questions. A systematic review uses predefined criteria to identify all the research on a given topic; a meta-analysis is a statistical approach that combines the results of several studies.
What Did the Researchers Do and Find?
The researchers identified 46 published papers that studied people with lung cancer in whom receipt of treatment was reported in terms of an indicator of socioeconomic position, such as a measure of income or deprivation. Twenty-three of these papers were suitable for inclusion in a meta-analysis. Lower socioeconomic position was associated with a reduced likelihood of receiving any treatment. Specifically, the odds ratio (chance) of people in the lowest socioeconomic group receiving any treatment was 0.79 compared to people in the highest socioeconomic group. Lower socioeconomic position was also associated with a reduced chance of receiving surgery (OR = 0.68) and chemotherapy (OR = 0.82), but not radiotherapy. The association between socioeconomic position and surgery remained after taking cancer stage into account. That is, when receipt of surgery was examined in early-stage patients only, low socioeconomic position remained associated with reduced likelihood of surgery. Notably, the association between socioeconomic position and receipt of treatment was similar in studies undertaken in countries where health care is free at the point of service for everyone (for example, the UK) and in countries with primarily private insurance health care systems (for example, the US).
What Do These Findings Mean?
These findings suggest that patients in more socioeconomically deprived circumstances are less likely to receive any type of treatment, surgery, and chemotherapy (but not radiotherapy) for lung cancer than people who are less socioeconomically deprived. Importantly, these inequalities cannot be explained by socioeconomic differences in stage at presentation or by differences in health care system. The accuracy of these findings may be affected by several factors. For example, it is possible that only studies that found an association between socioeconomic position and receipt of treatment have been published (publication bias). Moreover, the studies identified did not include information regarding patient preferences, which could help explain at least some of the differences. Nevertheless, these results do suggest that socioeconomic inequalities in receipt of treatment may exacerbate socioeconomic inequalities in the incidence of lung cancer and may contribute to the observed poorer outcomes in lower socioeconomic position groups. Further research is needed to determine the system and patient factors that contribute to socioeconomic inequalities in lung cancer treatment before clear recommendations for changes to policy and practice can be made.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001376.
The US National Cancer Institute provides information about all aspects of lung cancer for patients and health care professionals (in English and Spanish); a monograph entitled Area Socioeconomic Variations in U. S. Cancer Incidence, Mortality, Stage, Treatment, and Survival, 19751999 is available
Cancer Research UK also provides detailed information about lung cancer and links to other resources, such as a policy statement on socioeconomic inequalities in cancer and a monograph detailing cancer and health inequalities in the UK
The UK National Health Service Choices website has a page on lung cancer that includes personal stories about diagnosis and treatment
MedlinePlus provides links to other US sources of information about lung cancer (in English and Spanish)
doi:10.1371/journal.pmed.1001376
PMCID: PMC3564770  PMID: 23393428
24.  Effect of Family Income on the Relationship Between Parental Education and Sealant Prevalence, National Health and Nutrition Examination Survey, 2005–2010 
Introduction
We examined the association between sealant prevalence and parental education for different levels of family income, controlling for other covariates.
Methods
We combined data from 2005–2006, 2007–2008, and 2009–2010 cycles of the National Health and Nutrition Examination Survey. The study sample was 7,090 participants aged 6 to 19 years. Explanatory variables, chosen on the basis of Andersen and Aday’s framework of health care utilization, were predisposing variables — child’s age, sex, race/ethnicity, and parental education (high school diploma); enabling variables — family income (<100% of the federal poverty level [FPL]; 100%–200% of the FPL; and >200% of the FPL), health insurance status, and regular source of medical care; and a need variable — future need for care (perceived child health status is excellent/very good, good, fair/poor). We conducted bivariate and multivariate analyses and included a term for interaction between education and income in the multivariate model. We report significant findings (P ≤ .05).
Results
Sealant prevalence was associated with all explanatory variables in bivariate and multivariate analyses. In bivariate analyses, higher parental education and family income were independently associated with higher sealant prevalence. In the multivariate analysis, higher parental education was associated with sealant prevalence among higher income children, but not among low-income children (<100% FPL). Sealant prevalence was higher among children with parental education greater than a high school diploma versus less than a high school diploma in families with income ≥100% FPL.
Conclusion
Our findings suggest that income modifies the association of parental education on sealant prevalence. Recognition of this relationship may be important for health promotion efforts.
doi:10.5888/pcd12.150037
PMCID: PMC4556104  PMID: 26312383
25.  Assessing Systems of Care for US Children with Epilepsy/Seizure Disorder 
Background. The proportion of US children with special health care needs (CSHCN) with epilepsy/seizure disorder who receive care in high-quality health service systems was examined. Methodology. We analyzed data for 40,242 CSHCN from the 2009-2010 National Survey of CSHCN and compared CSHCN with epilepsy/seizure disorder to CSHCN without epilepsy/seizure disorder. Measures included attainment rates for 6 federal quality indicators with comparisons conducted using chi square and logistic regression methods. In addition, CSHCN with epilepsy/seizure disorder were compared to CSHCN without epilepsy/seizure disorder on the basis of 14 unmet health care needs. Results. Lower attainment rates for receiving comprehensive care in a medical home and easily accessible community-based services were found for CSHCN with epilepsy/seizure disorder versus CSHCN without epilepsy/seizure disorder (medical home: 32% versus 43%; accessible community-based services: 50% versus 66%, resp.) in unadjusted analyses. Lower adjusted odds for these indicators as well as greater unmet need for specialists, dentistry, prescriptions, therapies, and mental health care were also found for CSHCN with epilepsy/seizure disorder. Conclusions. Further efforts are needed to improve attainment of high-quality health care services for CSHCN with epilepsy/seizure disorders.
doi:10.1155/2013/825824
PMCID: PMC3818841  PMID: 24228175

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