Children With Special Health Care Needs Research Articles

Medical Complexity among Children with Special Health Care Needs: A Two-Dimensional View.

To identify subgroups of U.S. children with special health care needs (CSHCN) and characterize key outcomes. Secondary analysis of 2009-2010 National Survey of CSHCN. Latent class analysis grouped individuals into substantively meaningful classes empirically derived from measures of pediatric medical complexity. Outcomes were compared among latent classes with weighted logistic or negative binomial regression. LCA identified four unique CSHCN subgroups: broad functional impairment (physical, cognitive, and mental health) with extensive health care (Class 1), broad functional impairment alone (Class 2), predominant physical impairment requiring family-delivered care (Class 3), and physical impairment alone (Class 4). CSHCN from Class 1 had the highest ED visit rates (IRR 3.3, p<.001) and hospitalization odds (AOR: 12.0, p<.001) and lowest odds of a medical home (AOR: 0.17, p<.001). CSHCN in Class 3, despite experiencing more shared decision making and medical home attributes, had more ED visits and missed school than CSHCN in Class 2 (p<.001); the latter, however, experienced more cost-related difficulties, care delays, and parents having to stop work (p<.001). Recognizing distinct impacts of cognitive and mental health impairments and health care delivery needs on CSHCN outcomes may better direct future intervention efforts.

Primary Care Offices vs. Specialty Clinics for Care of Children with Chronic Conditions

Coordination of care for children with special healthcare needs (CSHCN) among primary care pediatricians (PCPs) and subspecialty providers has

Medical Homes for Children With Special Health Care Needs: Primary Care or Subspecialty Service?

ObjectiveTo examine primary care pediatricians' (PCPs) beliefs about whether the family-centered medical home (FCMH) should be in primary or subspecialty care for children with different degrees of complexity; and to examine practice characteristics associated with these beliefs. MethodsData from the American Academy of Pediatrics Periodic Survey (PS 79) conducted in 2012 were analyzed. Outcomes were agreement/strong agreement that 1) primary care should be the FCMH locus for most children with special health care needs (CSHCN) and 2) subspecialty care is the best FCMH locus for children with rare or complex conditions. In multivariate models, we tested associations between outcomes and practice barriers (eg, work culture, time, cost) and facilitators (eg, having a care coordinator) to FCMH implementation. ResultsAmong 572 PCPs, 65% agreed/strongly agreed primary care is the best FCMH setting for most CSHCN, and 43% agreed/strongly agreed subspecialty care is the best setting for children with complexity. Cost and time as barriers to FCMH implementation were oppositely associated with the belief that primary care was best for most CSHCN (cost: adjusted odds ratio [AOR] 2.31, 1.36–3.90; time: AOR 0.48, 0.29–0.81). Lack of skills to communicate and coordinate care was associated with the belief that specialty care was the best FCMH for children with complexity (AOR 1.99, 1.05–3.79). ConclusionsA substantial minority endorsed specialty care as the best FCMH locus for children with medical complexity. Several barriers were associated with believing primary care to be the best FCMH for most CSHCN. Addressing medical complexity in FCMH implementation may enhance perceived value by pediatricians.

Families' concerns about the care of children with technology-dependent special health care needs.

To identify concerns of family members of Children with Special Health Care Needs (CSHCN) as far as care related to using technology, and to discuss nurses' performance in the face of these concerns. Qualitative descriptive research, developed through February and March 2014, through semi-structured interviews with six family members, caregivers of technology-dependent CSHCN who are followed at a University Hospital in Rio de Janeiro. The setting chosen was the family members' home. Data were submitted to content analysis. Concerns were distributed in a timeframe, divided between those occurring the moment the family members received the information about the technological device needed, then those which arose while accompanying the child during hospitalization, and finally those that remained after the hospital discharge. The family needs information and support from nurses, because different concerns emerge throughout the treatment and accompaniment of a technology-dependent child.

Sleep, health and memory: comparing parents of typically developing children and parents of children with special health‐care needs

Parents of children with special healthcare needs (CSHCNs) report poorer sleep than parents of typically developing (TD) children, which has been associated with poorer mental health. The relations between sleep disturbances and general health and memory among this population are unknown. The current study aimed to replicate the findings that parents of CSHCNs report poorer sleep quality than parents of TD children, and further examine how sleep is related to general health and memory. Participants (75 parents of TD children; 97 parents of CSHCNs) completed an online questionnaire consisting of: demographics, the Pittsburgh Sleep Quality Index (PSQI), the Prospective Retrospective Memory Questionnaire (PRMQ) and the Healthy Days Measure. Parents of CSHCNs reported worse global sleep than parents of TD children. Parents of CSHCNs took longer to fall asleep at night, had shorter sleep duration and worse subjective sleep quality than parents of TD children. Parents of CSHCNs also had worse prospective memory and were more likely to report poor general health than parents of TD children. Poorer sleep quality was associated with worse memory and health among both parents of TD children and parents of CSHCNs. Results from this study highlight the importance of addressing the sleep of parents of CSHCNs and support the need for more research in this area. By recognizing factors associated with parent's health and functioning, service providers may be better able to implement support programs for parents of CSHCNs.

Predicting high-cost pediatric patients: derivation and validation of a population-based model.

Health care administrators often lack feasible methods to prospectively identify new pediatric patients with high health care needs, precluding the ability to proactively target appropriate population health management programs to these children. To develop and validate a predictive model identifying high-cost pediatric patients using parent-reported health (PRH) measures that can be easily collected in clinical and administrative settings. Retrospective cohort study using 2-year panel data from the 2001 to 2011 rounds of the Medical Expenditure Panel Survey. A total of 24,163 children aged 5-17 with family incomes below 400% of the federal poverty line were included in this study. Predictive performance, including the c-statistic, sensitivity, specificity, and predictive values, of multivariate logistic regression models predicting top-decile health care expenditures over a 1-year period. Seven independent domains of PRH measures were tested for predictive capacity relative to basic sociodemographic information: the Children with Special Health Care Needs (CSHCN) Screener; subjectively rated health status; prior year health care utilization; behavioral problems; asthma diagnosis; access to health care; and parental health status and access to care. The CSHCN screener and prior year utilization domains exhibited the highest incremental predictive gains over the baseline model. A model including sociodemographic characteristics, the CSHCN screener, and prior year utilization had a c-statistic of 0.73 (95% confidence interval, 0.70-0.74), surpassing the commonly used threshold to establish sufficient predictive capacity (c-statistic>0.70). The proposed prediction tool, comprising a simple series of PRH measures, accurately stratifies pediatric populations by their risk of incurring high health care costs.

The Louisiana Family Opportunity Act Medicaid Buy-in Program.

The Family Opportunity Act Medicaid Buy-In Program (FOA) allows states to expand Medicaid coverage to children who meet selected disability and income eligibility criteria. FOA programs may help address family financial hardship as a result of underinsurance. We provide specific information about the FOA program and report the first results of a survey of parents or guardians of children with disabilities who were enrolled in Louisiana's FOA program. A convenience sample of families enrolled in the program (N=52) responded to questions derived from the National Survey of Children with Special Health Care Needs (CSHCN). These results were compared to two groups of Louisiana families of CSHCN that had responded to the 2009/10 national survey. Data suggest that children enrolled in the Louisiana FOA are younger than those enrolled in Supplemental Security Income, are more likely to have functional losses, and, perhaps due to their age, are less likely to have difficulty with anxiety, depression, or behavior problems. FOA families are less likely than families in either group to report receiving help with care coordination, and more likely to report financial problems due to their child's health. Respondents were also more likely to report that they received all the therapy services and specialty care they needed. The FOA program thus appears to be filling a niche in coverage needs among families of children with disabilities in Louisiana.

Trends in Unmet Need for Genetic Counseling Among Children With Special Health Care Needs, 2001–2010

ObjectiveAccess to genetic counseling is increasingly important to guide families' and clinicians' decision making, yet there is limited research on accessibility and affordability of counseling for families with children with special health care needs (CSHCN). Our study's objectives were to measure changes in unmet need for genetic counseling for CSHCN from 2001 to 2010 and to characterize child, family, and health system factors associated with unmet need. MethodsWe used parent-reported data from the 2001, 2005–2006, and 2009–2010 National Survey of Children With Special Health Care Needs. We used a logistic regression model to measure the impact of survey year, child (sex, age, severity of health condition), family (primary language, household income, insurance, financial problems related to cost of CSHCN's health care), and health system factors (region, genetic counselors per capita, having a usual source of care) on access to genetic counseling. ResultsUnmet need for genetic counseling increased significantly in 2009–2010 compared to 2001 (odds ratio 1.89; 95% confidence interval [CI] 1.44–2.47). Being older (adjusted odds ratio [aOR] 1.04; 95% CI 1.02–1.06), having severe health limitations (aOR 1.72; 95% CI 1.16–2.58), being uninsured (aOR 3.56; 95% CI 2.16–5.87), and having family financial problems due to health care costs (aOR 1.90; 95% CI 1.52–2.38) were significantly associated with greater unmet need for genetic counseling. Having a usual source of care was associated with decreased unmet need (aOR 0.55; 95% CI 0.37–0.83). ConclusionsUnmet need for genetic counseling has increased over the past 12 years. Uninsurance and financial problems related to health care costs were the largest drivers of unmet need over time.

Identifying Social Determinants of Health and Legal Needs for Children With Special Health Care Needs

Children with special health care needs (CSHCN) require comprehensive care with high levels of community and government assistance. Medical-legal partnerships may be particularly suited to address needs for this population. To explore this, we conducted in-depth telephone interviews of families of CSHCN cared for in the primary care practice of our tertiary care children's hospital. The majority of the sample (N = 46) had been late on housing payments and 17% of homeowners had been threatened with foreclosure. Families frequently reported denial of public benefits. Approximately 10% had executed advance planning documents such as guardianship plans for the children or wills for the parents. A minority of families had sought help from community agencies or lawyers. Less than one third had ever discussed any of the issues with health care providers, but two thirds were likely or very likely to in the future. CSHCN may especially benefit from the social support of a medical-legal partnership.

Complementary and alternative medicine (CAM) for children with special health care needs: A comparative usage study in Italy

IntroductionComplementary and Alternative Medicine (CAM) is widely used by families of children with special health care needs (CSHCN), mainly as an integrative approach with regards to conventional treatments. Nonetheless, studies comparing CAM usage among families of CSHCN with different pediatric diagnoses are sparse. The present study aimed at investigating features of CAM usage among Italian families of CSHCN with different common pediatric diseases. MethodsOne-hundred and twenty-one families were interviewed about access to conventional treatments and CAM usage for the care of their children. Four groups were identified based on childrens’ diagnosis: autistic spectrum disorder, cerebral palsy, genetic syndrome, and pediatric tumors. Main areas of investigation were pharmacological treatment, access to conventional rehabilitation programs, typology of CAM used, scopes of CAM usage, maternal perceived efficacy, CAM expenditure per month. ResultsAccess to traditional pharmacological treatment and conventional rehabilitation was unrelated to CAM usage. Mothers of children diagnosed with autistic spectrum disorders were found to use more CAM, with higher economic expenditure and lower perceived efficacy compared to the other groups. ConclusionsThe present findings document different patterns of CAM usage among families of CSHCN with different diagnoses in Italy. Clinical and ethical insights for family-physician relationship are further discussed.

Children with Special Health Care Needs in CHIP: Access, Use, and Child and Family Outcomes

ObjectiveTo assess how the Children's Health Insurance Program (CHIP) affects outcomes for children with special health care needs (CSHCN). MethodsWe used data from a survey of parents of recent and established CHIP enrollees conducted from January 2012 through March 2013 as part of a congressionally mandated evaluation of CHIP. We identified CSHCN in the sample using the Child and Adolescent Health Measurement Initiative's CSHCN screener. We compared the health care experiences of established CHIP enrollees to the pre-enrollment experiences of previously uninsured and privately insured recent CHIP enrollees, controlling for observable characteristics. ResultsParents of 4142 recent enrollees and 5518 established enrollees responded to the survey (response rates, 46% recent enrollees and 51% established enrollees). In the 10 survey states, about one-fourth of CHIP enrollees had a special health care need. Compared to being uninsured, parents of CSHCN who were established CHIP enrollees reported greater access to and use of medical and dental care, less difficulty meeting their child's health care needs, fewer unmet needs, and better dental health status for their child. Compared to having private insurance, parents of CSHCN who were established CHIP enrollees reported similar levels of access to and use of medical and dental care and unmet needs, and less difficulty meeting their child's health care needs. ConclusionsCHIP has significant benefits for eligible CSHCN and their families compared to being uninsured and appears to have some benefits compared to private insurance.

The Mismatch Between Children's Health Needs and School Resources.

There are increasing numbers of children with special health care needs (CSHCN) who require various levels of care each school day. The purpose of this study was to examine the role of public schools in supporting CSHCN through in-depth key informant interviews. For this qualitative study, the authors interviewed 17 key informants to identify key themes, provide recommendations, and generate hypotheses for further statewide survey of school nurse services. Key informants identified successful strategies and challenges that public schools face in meeting the needs of all CSHCN. Although schools are well intentioned, there is wide variation in the ability of schools to meet the needs of CSHCN. Increased funding, monitoring of school health services, integration of services, and interagency collaboration are strategies that could improve the delivery of health services to CSHCN in schools.

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.

School Health Services for Children With Special Health Care Needs in California.

Children with special health care needs (CSHCN) are at risk for school failure when their health needs are not met. Current studies have identified a strong connection between school success and health. This study attempted to determine (a) how schools meet the direct service health needs of children and (b) who provides those services. The study used the following two methods: (a) analysis of administrative data from the California Basic Educational Data System and (b) a cross-sectional online survey of 446 practicing California school nurses. Only 43% of California's school districts employ school nurses. Unlicensed school personnel with a variety of unregulated training provide school health services. There is a lack of identification of CSHCN, and communication barriers impair the ability to deliver care. Study results indicate that California invests minimally in school health services.

Treatment of Attention Deficit/Hyperactivity Disorder among Children with Special Health Care Needs

To describe the parent-reported prevalence of treatments for attention deficit/hyperactivity disorder (ADHD) among a national sample of children with special health care needs (CSHCN), and assess the alignment of ADHD treatment with current American Academy of Pediatrics guidelines. Parent-reported data from the 2009-2010 National Survey of Children with Special Health Care Needs allowed for weighted national and state-based prevalence estimates of medication, behavioral therapy, and dietary supplement use for ADHD treatment among CSHCN aged 4-17 years with current ADHD. National estimates were compared across demographic groups, ADHD severity, and comorbidities. Medication treatment by drug class was described. Of CSHCN with current ADHD, 74.0% had received medication treatment in the past week, 44.0% had received behavioral therapy in the past year, and 10.2% used dietary supplements for ADHD in the past year. Overall, 87.3% had received past week medication treatment or past year behavioral therapy (both, 30.7%; neither, 12.7%). Among preschool-aged CSHCN with ADHD, 25.4% received medication treatment alone, 31.9% received behavioral therapy alone, 21.2% received both treatments, and 21.4% received neither treatment. Central nervous system stimulants were the most common medication class (84.8%) among CSHCN with ADHD, followed by the selective norepinephrine reuptake inhibitor atomoxetine (8.4%). These estimates provide a benchmark of clinical practice for the period directly preceding issuance of the American Academy of Pediatrics' 2011 ADHD guidelines. Most children with ADHD received medication treatment or behavioral therapy; just under one-third received both. Multimodal treatment was most common for CSHCN with severe ADHD and those with comorbidities. Approximately one-half of preschoolers received behavioral therapy, the recommended first-line treatment for this age group.

Health literacy and the Affordable Care Act: a policy analysis for children with special health care needs in the USA.

Children with special health care needs (CSHCN) represent populations with chronic health conditions that are often high utilizers of health care. Limited health literacy has emerged as a key indicator of adverse health outcomes, and CSHCN from limited health literacy families are particularly vulnerable. The purpose of this policy analysis is to outline key provisions in the Affordable Care Act (ACA) that incorporate health literacy approaches for implementation and have implications for CSHCN in the USA. Several key provisions are incorporated in the ACA that involve health literacy and have implications for CSHCN. These include: expansion of public insurance coverage and simplifying the enrollment process, provisions assuring equity in health care and communication among all populations, improving access to patient-centered medical homes that can offer care coordination, ensuring enhanced medication safety by changing liquid medication labeling requirements, and provisions to train health care providers on literacy issues. More research is needed to determine how provisions pertaining to health literacy in the ACA are implemented in various states.

Parent health beliefs, social determinants of health, and child health services utilization among U.S. school-age children with autism.

Substantial variation exists in autism spectrum disorder (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 ASD. We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009-2010 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 the use of psychotropic medication, traditional therapy, or complementary/alternative therapy for ASD. 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 believe that 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. 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.

Children with special health care needs: with population-based data, better individual care plans.

Children with special health care needs (CSHCN) represent 15% to 20% of all US children.1 Several studies have documented well the substantial health care utilization,2 school problems,3 and family financial costs,4 as well as decreased parental workforce participation5,6 and worse caregiver well-being6 for CSHCN generally and for a subset with more complex medical conditions. These effects are somewhat attenuated but not eliminated when families have access to practice-level primary care medical home programs7 and programs specifically targeting children with complex chronic conditions,8 and when stronger state-level safety net policies are in place.9,10 In this issue of Pediatrics , Quach et al11 accomplish 2 important goals that help to inform programs and policies to support families in caring for CSHCN using longitudinal population cohort surveys that incorporate the Children with Special Health Care Needs Screener. Quach and colleagues describe 4 distinct trajectories of having a special health care need (no special health care need and transient, emerging, … Address correspondence to Jeanne Van Cleave, MD, 100 Cambridge St, 15th Floor, C100, Boston, MA 02114. E-mail: jvancleave{at}partners.org

Improving care coordination for African American and Hispanic children with special healthcare needs

Purpose– The purpose of this paper is to explore perceptions of family-to-family (F2F) information centres by health care providers serving Hispanic and African American families of children with special healthcare needs (CSHCN) and how that information can be used to enhance effective collaboration to address disparities in access to services.Design/methodology/approach– In this second phase of a formative, qualitative multi-phase, collaborative study by a university centre and three F2Fs to develop strategies to increase the use of their centres by Hispanic and African American populations, the authors report the results of key informant interviews with healthcare providers serving the African American and Hispanic families who participated in focus groups at the three centres.Findings– Healthcare providers reported that F2Fs play a unique role in providing families support and skills to advocate within systems. However, barriers to healthcare providers recommending F2Fs to families include a lack of knowledge about the specific services provided, the need for face-to-face contact to feel comfortable making a referral and a lack of a formalised referral and feedback process that is in line with their experiences in the medical services system.Practical implications– F2Fs can increase use of their centres by African American and Hispanic families through provider referrals by: promoting specific services and supports they offer families, rather than describing their programmes; promoting how they can help providers with the care coordination functions that are time consuming; offering providers training opportunities; and developing processes for referrals that include feedback to providers.Originality/value– There are no studies that currently address strengthening the collaboration between medical homes and F2F centres to improve care coordination, access to information and receiving needed services for Hispanic and African American CSHCN and their families. Understanding how healthcare providers serving Hispanic and African American CSHCN perceive F2Fs and currently work with them will enhance this collaboration.