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Purpose: Youth with special health care needs (YSHCN) increasingly live into adulthood, and approximately 500,000 U.S. youth transition from pediatric to adult health care systems annually. Through a systematic literature review, we sought to (1) determine adult outcomes for YSHCN who have no special transition interventions and (2) identify evidence for strategies that lead to better outcomes, in particular, access to adult health care. Methods: We searched the medical, nursing, psychology, and social science literature and reviewed selected articles’ reference lists. Transition experts also recommended relevant articles. Search criteria included health conditions, transition-related activities, and health care and related outcomes. We selected English-language articles published from 1986 to 2010, with an abstract, description of transition-related interventions (objective 2), and posttransition outcomes. Investigators abstracted study design, population, sample size, description of intervention, data collection methods, and findings. Results: The search yielded 3,370 articles, of which 15 met study criteria. Although many YSHCN appear to make the transition to adult health providers successfully, some experience serious gaps in outcomes; those with more complex conditions or with conditions affecting the nervous system appear to have less good transitions. Some evidence supports introducing YSHCN to adult providers before leaving the pediatric system; one study supports using care coordinators to improve outcomes. Conclusions: Evidence regarding programs to facilitate transition for YSHCN is inconclusive. Weak evidence suggests that meeting adult providers before transfer may facilitate posttransition access to care. We recommend additional studies with strong research designs to guide best practice in preparing YSHCN for adulthood.

Care coordination (CC), a component of the medical home, may aid families who have children with special health care needs (CSHCN). Few data link CC to individual patient outcomes. To compare parent-reported outcomes for CSHCN receiving practice-based care coordination with those receiving standard care. This cross-sectional study examined two groups of CSHCN: one that received the services of a care coordinator for a year and one that did not. Parental surveys assessed: access to medical care, practice help and support, satisfaction with services, and parental mental and physical health. Associations between group status and parent-reported outcomes were assessed via regression analyses controlling for sociodemographic and health status variables. We also examined whether CC households who reported higher satisfaction with care had higher scores in the four domains. Parents in the care coordination group reported higher utilization of both primary care and specialist physicians, but did not report better practice help and support, better satisfaction with care, or better overall parental health. Parents in the care coordination group who reported being satisfied with their care rated their PCPs as more helpful than did the comparison families. Parents in this subgroup also reported significantly higher levels of care coordination than did parents in the comparison group. CSHCN appear to have higher PCP and specialist utilization when they receive supplemental care coordination. Additionally, those who are more satisfied with the care coordination they receive are happier with the assistance from their PCP and the overall care coordination provided.

CONTEXT. The receipt of health care in a medical home is increasingly touted as a fundamental basis for improved care for persons with chronic conditions, yet the evidence for this claim has not been systematically assessed.OBJECTIVE. Our goal was to determine the evidence for the federal Maternal and Child Health Bureau recommendation that children with special health care needs receive ongoing comprehensive care within a medical home.METHODS. We searched the nursing and medical literature, references of selected articles, and requested expert recommendations. Search terms included children with special health care needs, medical home-related interventions, and health-related outcomes. Articles that met defined criteria (eg, children with special health care needs, United States–based, quantitative) were selected. We extracted data, including design, population characteristics, sample size, intervention, and findings from each article.RESULTS. We selected 33 articles that reported on 30 distinct studies, 10 of which were comparison-group studies. None of the studies examined the medical home in its entirety. Although tempered by weak designs, inconsistent definitions and extent of medical home attributes, and inconsistent outcome measures, the preponderance of evidence supported a positive relationship between the medical home and desired outcomes, such as better health status, timeliness of care, family centeredness, and improved family functioning.CONCLUSIONS. The evidence provides moderate support for the hypothesis that medical homes provide improved health-related outcomes for children with special health care needs. Additional studies with comparison groups encompassing all or most of the attributes of the medical home need to be undertaken.

OBJECTIVES: The purpose of this study was to determine the effects of poverty, program generosity, and health on state variations in enrollment of children and adolescents in the Supplemental Security Income (SSI) program during recent program expansions. METHODS: The relationship of state SSI rates for 1989 and 1992 to child poverty, health, and program generosity were determined by multiple regression. RESULTS: The mean percentage of children enrolled grew from 0.36% (1989) to 0.75% (1992). Poverty rates accounted for 78% of the variance among states in 1989 and 53% in 1992. Other indicators accounted for little variance. CONCLUSIONS: Differences in state poverty levels explained almost all variation in SSI enrollment.

Background. Hospitalization rates for childhood asthma are three times as high in Boston, Massachusetts, as in Rochester, New York; New Haven, Connecticut, rates are intermediate. We undertook this study to determine how care for children admitted for asthma varies across these communities. Methods. We performed a community-wide retrospective chart review. We reviewed a random sample of all asthma hospitalizations, from 1988 to 1990, of children 2 to 12 years old living in these communities (n = 614). Abstracted data included demographics, illness severity, and treatment before admission. Results. Compared with Rochester children, Boston children were less likely to have received maintenance preventive therapy (inhaled corticosteroids or cromolyn [odds ratio (OR), 0.4 (0.2, 0.9)]), acute "rescue" therapy (oral corticosteroids [OR, 0.2 (0.1, 0.4)]), or inhaled betaagonist therapy [OR, 0.5 (0.3, 1.0)]. A larger proportion of admitted asthmatic patients in Boston (34%) were in the least severely ill group—oxygen saturation 95% or above—compared with patients in Rochester (20%). Conclusions. The quality of ambulatory care, including choice of preventive therapies and thresholds for admission, likely plays a key role in determining community hospitalization rates for chronic conditions such as childhood asthma.

Background The American Academy of Pediatrics and other organizations recommend several screening tests as part of preventive care. The proportion of children who are appropriately screened and who receive follow-up care is low. Objective To conduct a systematic review of the evidence for practice-based interventions to increase the proportion of patients receiving recommended screening and follow-up services in pediatric primary care. Data Source Medline database of journal citations. Study Eligibility Criteria, Participants, and Interventions We developed a strategy to search MEDLINE to identify relevant articles. We selected search terms to capture categories of conditions (eg, developmental disabilities, obesity), screening tests, specific interventions (eg, quality improvement initiatives, electronic records enhancements), and primary care. We searched references of selected articles and reviewed articles suggested by experts. We included all studies with a distinct, primary care-based intervention and post-intervention screening data, and studies that focused on children and young adults (≤21 years of age). We excluded studies of newborn screening. Study Appraisal and Synthesis Methods Abstracts were screened by 2 reviewers and articles with relevant abstracts received full text review and were evaluated for inclusion criteria. A structured tool was used to abstract data from selected articles. Because of heterogeneous interventions and outcomes, we did not attempt a meta-analysis. Results From 2547 returned titles and abstracts, 23 articles were reviewed. Nine were pre-post comparisons, 5 were randomized trials, 3 were postintervention comparisons with a control group, 3 were postintervention cross-sectional analyses only, and 3 reported time series data. Of 14 articles with preintervention or control group data and significance testing, 12 reported increases in the proportion of patients appropriately screened. Interventions were heterogeneous and often multifaceted, and several types of interventions, such as provider/staff training, electronic medical record templates/prompts, and learning collaboratives, appeared effective in improving screening quality. Few articles described interventions to track screening results or referral completion for those with abnormal tests. Data were often limited by single-site, nonrandomized design. Conclusions Several feasible, practice- and provider-level interventions appear to increase the quality of screening in pediatric primary care. Evidence for interventions to improve follow-up of screening tests is scant. Future research should focus on which specific interventions are most effective, whether effects are sustained over time, and what interventions improve follow-up of abnormal screening tests.

BACKGROUND: Over the last decades, there have been great advances in health care delivered to children with chronic conditions, but not all children have benefitted equally from them. OBJECTIVES: To describe health inequities experienced by children with chronic health conditions. METHODS: We performed a literature review of English-language studies identified from the Medline, Centers for Disease Control and Prevention, National Cancer Institute, and Cystic Fibrosis Foundation Web sites that were published between January 1985 and May 2009, included children aged 0 to 18 years, and contained the key words “incidence,” “prevalence,” “survival,” “mortality,” or “disparity” in the title or abstract for the following health conditions: acute leukemia, asthma, attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders, cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, HIV/AIDS, major congenital heart defects, major depressive disorder, sickle cell anemia, spina bifida, and traumatic brain injury. RESULTS: Black children had higher rates of cerebral palsy and HIV/AIDS, were less likely to be diagnosed with ADHD, had more emergency department visits, hospitalizations, and had higher mortality rates associated with asthma; and survived less often with Down syndrome, type 1 diabetes, and traumatic brain injury when compared with white children. Hispanic children had higher rates of spina bifida from Mexico-born mothers, had higher rates of HIV/AIDS and depression, were less likely to be diagnosed with ADHD, had poorer glycemic control with type 1 diabetes, and survived less often with acute leukemia compared with white children. CONCLUSIONS: Serious racial and ethnic health and health care inequities persist for children with chronic health conditions.

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.

Objective To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services. Design Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition. Setting Policy research group and advisors at multiple sites. Participants Policy researchers, content experts on CYSHCN, family representatives, and state program directors. Outcome Definition of a system of services for CYSHCN. Results This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the “community-based systems of services” contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. Conclusions This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general.

Health care reform may well address many of the needs of children and adolescents, offering greater emphasis on prevention and providing insurance to the large number of US children currently uninsured. Yet key public health and community health service programs essential to the well being of children and adolescents have gained little attention in the current national health care reform debates. Most discussions focus on insurance and cost containment and fail to address other systemic barriers to health care. Insurance alone will not solve the health problems faced by children and adolescents. SPECIAL NEEDS OF CHILDREN AND ADOLESCENTS Addressing the health risks that children and adolescents face requires combining public and private efforts and community-oriented and personal care services.

Objective Family-centered care (FCC) has received widespread endorsement for use in care in the United States. In this study, we conducted a systematic review of evidence for FCC focusing specifically on family-provider partnership as the activity that constitutes FCC. Methods We found and reviewed articles from the medical, nursing, psychology, and sociology literature spanning 1986 to 2010. We also reviewed articles obtained through related references and through recommendations from key informants. Four sets of terms were used to search, including FCC, child/adolescent, children with special health care needs (CSHCN, defined broadly or by condition), and a relevant outcome. Results Twenty-four studies met the review criteria. Eight were cross-sectional studies from the National Survey of Children With Special Health Care Needs, and 7 were reports of randomized, controlled trials. Of the 24 articles reviewed, 13 examined populations of CSHCN or similar populations, 6 examined children with asthma, and the remaining studied children with other specific conditions. We found positive associations of FCC with improvements in efficient use of services, health status, satisfaction, access to care, communication, systems of care, family functioning, and family impact/cost. There was little available evidence, however, for some outcomes, including cost and transition. Conclusions The available evidence suggests that FCC is associated with improved outcomes for CSHCN. With positive findings for most of the studies reviewed here and the compelling arguments for FCC, we recommend the use of this approach by individuals and organizations.

Objective: To examine relations between characteristics of a child's usual source of primary care and involvement of that source before and during hospitalization. Design: Medical record review of pediatric hospitalizations. Setting: All hospitals in Boston, Mass; New Haven, Conn; and Rochester, NY admitting children during the calendar years 1988 through 1990. Patients: The study included 1875 randomly selected pediatric hospitalizations for five diagnostic groups (ie, asthma and other lower respiratory tract disease, abdominal pain [includingappendicitis],meningitis [bacterial and viral], toxic ingestions, and head injury). Hospital records selected were limited to children aged between 1 month and 12 years and residing in the three study communities. Outcome Measures: Whether the primary care source examined the child before admission to the hospital, referred the child to the emergency department, or served as the in-hospital attending physician. Results: Of the medical charts reviewed, 85.7% identified primary care sources. Children in Rochester had higher rates of medical visits before admission ( P P P 2 ) than children in Boston and New Haven. Patterns of primary care involvement also varied by source of care within cities, after controlling for income and severity of illness. Compared with children from Rochester community-based private practices, children in Boston receiving care from health centers, hospitals, or community-based private practices generally had 25% to 50% lower likelihood of positive findings on all primary care involvement measures. Children in New Haven receiving care from community-based private or hospital-based practices also had lower rates, but involvement rates were not higher when they received care from health centers. Other children in Rochester and children receiving care from health maintenance organizations in all cities demonstrated almost no significant differences compared with data from Rochester community practices. Conclusion: The source of primary care is associated with patterns of prehospital and hospital care among hospitalized children, although specific associations vary by city. (Arch Pediatr Adolesc Med. 1996;150:479-486)