Amy J. Houtrow

Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

Prevalence of obesity among children with chronic conditions.

New evidence suggests that children with chronic conditions may be predisposed to overweight and obesity. This study provides prevalence estimate of obesity for children and adolescents with select chronic conditions. We analyzed reported height and weight and the corresponding BMI from 46,707 subjects aged 10–17 years collected by the National Survey of Childrens Health (NSCH‐2003). Our main outcome measure was the prevalence of obesity (defined as ≥95th percentile of the sex‐specific BMI for age growth charts), adjusted for underlying demographic and socioeconomic factors. We found that the prevalence of obesity among children 10–17 years of age without a chronic condition was 12.2% (95% confidence interval (CI) 11.5–13.0); the prevalence of obesity for children with asthma was 19.7% (19.5–19.9); with a hearing/vision condition was 18.4% (18.2–18.5); with learning disability was 19.3% (19.2–19.4); with autism was 23.4% (23.2–23.6); and with attention‐deficit/hyperactivity disorder was 18.9% (18.7–19.0). Our findings suggest that children 10–17 years of age with select chronic conditions were at increased risk for obesity compared to their counterparts without a chronic condition.

Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems

Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care.

Chronic conditions among children admitted to U.S. pediatric intensive care units: Their prevalence and impact on risk for mortality and prolonged length of stay*

Objective:To estimate the prevalence of chronic conditions among children admitted to U.S. pediatric intensive care units and to assess whether patients with complex chronic conditions experience pediatric intensive care unit mortality and prolonged length of stay risk beyond that predicted by commonly used severity-of-illness risk-adjustment models. Design, Setting, and Patients:Retrospective cohort analysis of 52,791 pediatric admissions to 54 U.S. pediatric intensive care units that participated in the Virtual Pediatric Intensive Care Unit Systems database in 2008. Measurements:Hierarchical logistic regression models, clustered by pediatric intensive care unit site, for pediatric intensive care unit mortality and length of stay >15 days. Standardized mortality ratios adjusted for severity-of-illness score alone and with complex chronic conditions. Main Results:Fifty-three percent of pediatric intensive care unit admissions had complex chronic conditions, and 18.5% had noncomplex chronic conditions. The prevalence of these conditions and their organ system subcategories varied considerably across sites. The majority of complex chronic condition subcategories were associated with significantly greater odds of pediatric intensive care unit mortality (odds ratios 1.25–2.9, all p values < .02) compared to having a noncomplex chronic condition or no chronic condition, after controlling for age, gender, trauma, and severity-of-illness. Only respiratory, gastrointestinal, and rheumatologic/orthopedic/psychiatric complex chronic conditions were not associated with increased odds of pediatric intensive care unit mortality. All subcategories were significantly associated with prolonged length of stay. All noncomplex chronic condition subcategories were either not associated or were negatively associated with pediatric intensive care unit mortality, and most were not associated with prolonged length of stay, compared to having no chronic conditions. Among this group of pediatric intensive care units, adding complex chronic conditions to risk-adjustment models led to greater model accuracy but did not substantially change unit-level standardized mortality ratios. Conclusions:Children with complex chronic conditions were at greater risk for pediatric intensive care unit mortality and prolonged length of stay than those with no chronic conditions, but the magnitude of risk varied across subcategories. Inclusion of complex chronic conditions into models of pediatric intensive care unit mortality improved model accuracy but had little impact on standardized mortality ratios.

Changing Trends of Childhood Disability, 2001–2011

BACKGROUND: Over the past half century the prevalence of childhood disability increased dramatically, coupled with notable increases in the prevalence of mental health and neurodevelopmental conditions. This study provides a detailed assessment of recent trends in childhood disability in relation to health conditions and sociodemographic factors. METHODS: Secondary data analysis of National Health Interview Survey (NHIS) datasets 2001–2002, 2004–2005, 2007–2008, and 2010–2011 (N = 198 888) was conducted to calculate the prevalence, rate of change, severity, and sociodemographic disparities of parent-reported childhood disability. RESULTS: The prevalence of childhood disability has continued to increase, growing by 15.6% between 2001–2002 and 2010–2011. Nearly 6 million children were considered disabled in 2010–2011. Children living in poverty experienced the highest rates of disability, 102.6 cases per 1000 population in 2010–2011, but unexpectedly, children living in households with incomes ≥400% above the federal poverty level experienced the largest increase (28.4%) over this 10-year period. The percentage of disability cases related to any physical health condition declined 11.8% during the decade, whereas cases related to any neurodevelopmental or mental health condition increased by 20.9%. CONCLUSIONS: Over the past decade, parent-reported childhood disability steadily increased. As childhood disability due to physical conditions declined, there was a large increase in disabilities due to neurodevelopmental or mental health problems. For the first time since the NHIS began tracking childhood disability in 1957, the rise in reported prevalence is disproportionately occurring among socially advantaged families. This unexpected finding highlights the need to better understand the social, medical, and environmental factors influencing parent reports of childhood disability.

Understanding Factors Associated With Work Loss for Families Caring for CSHCN

OBJECTIVE: Parents of children with special health care needs (CSHCN) are at risk for work loss as a result of the complex health needs of their children. Our objective was to determine how child- and family-level factors and the medical home are associated with work loss for these families. METHODS: We performed secondary data analyses of the National Survey of Children With Special Health Care Needs (NS-CSHCN) 2005–2006. This is a nationally representative sample of CSHCN in the United States. The primary outcome measure was having any family member report work loss to care for a CSHCN. We calculated survey-weighted unadjusted and adjusted odds ratios by using independent variables that included child demographic factors, functional limitation, condition stability, insurance status/type, family income, and criteria of the medical home. RESULTS: Overall, 23.7% of the parents of CSHCN reported work loss as a result of their childs health care needs. Greater functional limitation and condition instability were associated with increased odds of family work loss. The presence of a medical home in the multivariate model was associated with a 50% reduction in the odds of reported family work loss. CONCLUSIONS: Approximately 24% of families with CSHCN have experienced work loss to meet the medical needs of their child. Availability of a system of care support, such as the medical home, is associated with lower work loss reported by families. Therefore, improved systems of care for CSHCN may have the potential to optimize work productivity for families.

Preventive Health Care for Children With and Without Special Health Care Needs

OBJECTIVE. The objective of this study was to compare the receipt of preventive health services for children with and without special health care needs and to identify predictors of these health services for children with special health care needs using nationally representative data. METHODS. Data from the 2002 and 2003 Medical Expenditure Panel Surveys were analyzed. A total of 18279 children aged 3 to 17 years were included in our study. The Child Preventive Health Supplement was used to identify caregiver recall of specific health screening measures and anticipatory guidance during the previous 12 months. Odds ratios were calculated for predictive factors of preventive services for children with special health care needs. RESULTS. The prevalence of special health care needs in children aged 3 to 17 years was 21.6%. Based on caregiver reports, 87.5% of children with special health care needs had ≥1 health screening measure checked in the past year compared with 73.1% of children without special health care needs. Receipt of ≥1 topic of anticipatory guidance was reported for 69.8% of children with special health care needs compared with 55.2% of children without special health care needs. Black and Hispanic caregivers of children with special health care needs were more likely than others to report receipt of all 6 categories of anticipatory guidance measured in this study. CONCLUSIONS. We found that caregivers of children with special health care needs were more likely to report receipt of anticipatory guidance and health screening than were caregivers of children without special health care needs. Although a majority of these caregivers reported receiving some health screening and anticipatory guidance on an annual basis, there are clear gaps in the delivery of preventive health services. This study identifies areas for improvement in the delivery of preventive health services for children with special health care needs and children in general.

Profiling Health and Health-Related Services for Children With Special Health Care Needs With and Without Disabilities

OBJECTIVE The aims of this study were 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 2005-2006 National Survey of Children with Special Health Care Needs was conducted. The sociodemographics, 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 over-represented among CSHCN with disabilities, compared with 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 with other CSHCN. Thirty-two percent of CSHCN with disabilities received care in a medical home compared with 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.

Inequities in health care needs for children with medical complexity.

Children with special health care needs are believed to be susceptible to inequities in health and health care access. Within the group with special needs, there is a smaller group of children with medical complexity: children who require medical services beyond what is typically required by children with special health care needs. We describe health care inequities for the children with medical complexity compared to children with special health care needs but without medical complexity, based on a secondary analysis of data from the 2005-06 and 2009-10 National Survey of Children with Special Health Care Needs. The survey examines the prevalence, health care service use, and needs of children and youth with special care needs, as reported by their families. The inequities we examined were those based on race/ethnicity, primary language in the household, insurance type, and poverty status. We found that children with medical complexity were twice as likely to have at least one unmet need, compared to children without medical complexity. Among the children with medical complexity, unmet need was not associated with primary language, income level, or having Medicaid. We conclude that medical complexity itself can be a primary determinant of unmet needs.

The Future of Health Insurance for Children With Special Health Care Needs

CONTEXT. Because of their elevated need for services, health insurance is particularly important for children with special health care needs. In this article we assess how well the current system is meeting the insurance needs of children with special health care needs and how emerging trends in health insurance may affect their well-being. METHODS. We begin with a review of the evidence on the impact of health insurance on the health care experiences of children with special health care needs based on the peer-reviewed literature. We then assess how well the current system meets the needs of these children by using data from 2 editions of the National Survey of Children With Special Health Care Needs. Finally, we present an analysis of recent developments and emerging trends in the health insurance marketplace that may affect this population. RESULTS. Although a high proportion of children with special health care needs have insurance at any point in time, nearly 40% are either uninsured at least part of the year or have coverage that is inadequate. Recent expansions in public coverage, although offset in part by a contraction in employer-based coverage, have led to modest but significant reductions in the number of uninsured children with special health care needs. Emerging insurance products, including consumer-directed health plans, may expose children with special health care needs and their families to greater financial risks. CONCLUSIONS. Health insurance coverage has the potential to secure access to needed care and improve the quality of life for these children while protecting their families from financially burdensome health care expenses. Continued vigilance and advocacy for children and youth with special health care needs are needed to ensure that these children have access to adequate coverage and that they fare well under health care reform.