Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health

OBJECTIVE: To assess the extent to which parents of children with autism compared with parents of children with asthma or other special health care needs report receiving primary care for their child consistent with the American Academy of Pediatrics medical home model. DESIGN: Population-based cross-sectional study. SETTING: National Survey for Children's Health 2003-2004 telephone interview. PARTICIPANTS: Parents of 495 children with autism, parents of 6716 children with asthma, and parents of 11,403 children with other special health care needs without asthma. Main Exposures Autism and other special health care needs including asthma. MAIN OUTCOME MEASURES: Medical home score and components of care, as follows: personal provider and preventive; family-centered, compassionate, and culturally appropriate; accessible; comprehensive; and coordinated. RESULTS: The odds of parents reporting care consistent with that in a medical home were less likely for children with autism (odds ratio, 0.45; 95% confidence interval, 0.30-0.66) and more likely for children with asthma (odds ratio, 1.17; 95% confidence interval, 1.06-1.30) compared with children with other special health care needs (1 [reference]). These differences persisted even after controlling for condition severity, personal characteristics, and insurance status. Specific components of a medical home less prevalent among children with autism than among children with other special health care needs included family-centered, comprehensive, and coordinated care. CONCLUSION: Although we could not evaluate the reasons why, a large percentage of children with autism do not receive primary care consistent with that in a medical home.     

Managed care and children with special health care needs.

Providing care to children with special health care needs within a managed care environment presents special challenges for providers and parents alike. The goal of managed care is to contain costs by encouraging or requiring members to obtain services through a designated network. In managed care programs, children and families may experience limited access to specialized care and services, along with decreased fragmentation inherent in fee-for-service care. For providers, managed care creates financial risk while offering opportunities for acquiring new skills and knowledge. The primary care provider assumes a central role in creating a medical home that links the child and family to a single provider who is an ongoing resource and partner in care. To provide comprehensive, coordinated, family-centered care, the medical home provider must learn about a variety of services available within the community and guide parents in learning how to access the services that meet their child's needs. Pediatric nurse practitioners can play a significant role in ensuring that children receive the most appropriate care.     

Medical Home for Adolescents: Low Attainment Rates for Those With Mental Health Problems and Other Vulnerable Groups

BackgroundThe importance of the medical home for children has been demonstrated but has not been examined comprehensively for adolescents. Adolescence is a unique period of physical, cognitive, and psychosocial changes when many mental disorders first emerge; thus, receiving care within a medical home could improve well-being. This study examines rates of medical home attainment and its components for adolescents and subgroups, including those with mental health conditions.MethodsUtilizing the 2007 National Survey of Children’s Health, we determined the following for adolescents aged 10 to 17 years (n = 45 897): 1) rates of medical home attainment and its 5 components (usual source of care, having a personal doctor, and receiving needed referrals, effective care coordination, and family-centered care); and 2) subgroup differences; gender, race/ethnicity, income, insurance, region, language spoken at home, respondent education, and the presence of mental health conditions.ResultsFifty-four percent of adolescents had a past-year medical home. Rates were lower for minority youth compared to whites; lower-income and uninsured youth; those in households that are non–English speaking in which the respondent did not have some college; and those with mental health as opposed to physical health conditions (all P < .01). Patterns of disparities in the medical home components were similar, and rates were lowest for effective care coordination and family-centered care components.ConclusionsNearly half of adolescents lacked a medical home in the past year. Even lower rates for subgroups highlight the need to increase access to comprehensive quality health care. Efforts to improve effective care coordination and family-centered care could result in higher quality of care for all children and adolescents, and specifically for disadvantaged adolescents and those with mental health conditions.     

Development of a Hospital-Based Care Coordination Program for Children With Special Health Care Needs

A hospital-based Continuity of Care program for children with special health care needs is described. A family-centered team approach provides care coordination and a medical home. The program has grown during the past 10 years to include inpatients and outpatients from multiple services and outreach clinics. Improved outcomes, including decreased length of stay, decreased cost, and high family satisfaction, are demonstrated by participants in the program. Pediatric nurse practitioners play an important role in the medical home, collaborating with primary care providers, hospital-based specialists, community services, and social workers to provide services to children with special health care needs.     

Redefining primary pediatric care for children with special health care needs: the primary care medical home

PURPOSE OF REVIEW: As considerations of the quality of health care have matured, the role of pediatric primary care providers and models for the delivery of primary care have received growing attention. Particularly for children with chronic conditions, the need for proactive, planned, and coordinated care delivered in partnership with consumers has become more apparent. The primary care medical home has emerged as a model favored by national organizations representing pediatricians and family physicians as well as national public health policy makers, yet implementation of this model remains limited and the evidence base for its value is not yet highly developed. RECENT FINDINGS: Most studies of primary care outcomes involve individual elements of the medical home such as care coordination and continuity of care. Limited data that are emerging from studies of the medical home model as a whole in practice settings suggest improvements in patient satisfaction and in some areas of utilization. No data are available that examine specific functional or physical health outcomes associated with primary care models like the medical home. SUMMARY: The pediatric primary care medical home provides a care model for both well children and those with special health care needs that expands primary care services beyond those provided in the examination room by individual providers to include systemic services such as patient registries, explicit care planning and care coordination, planned co-management with specialists, patient advocacy, and patient education. There is an immediate need for large-scale, practice-based studies of the outcomes for children and youth, providers, and the health care system when such improvements in primary care are implemented.     

Medical home disparities between children with public and private insurance

ObjectiveTo compare the prevalence of a medical home for children with public versus private insurance and identify components of the medical home that contribute to any differences.MethodsWe performed a secondary data analysis of the 2007 National Survey of Children's Health. A medical home was defined as meeting each of 5 components: 1) usual source of care; 2) personal doctor/nurse; 3) family-centered care; 4) care coordination, if needed; and 5) no problems getting a referral, if needed. We estimated the national prevalence of the medical home and its components for children with public versus private insurance. Comparisons were made using logistic regression, unadjusted and adjusted for sociodemographic factors.ResultsA total of 67% of privately insured children met all 5 components of the medical home, compared with only 45% of publicly insured children (P < .001). The gap in medical home prevalence between public and private groups remained significant after controlling for sociodemographic characteristics (public vs private adjusted odds ratio [AOR] 0.82; 95% confidence interval [95% CI] 0.73–0.92). Over 90% of children in both groups reported having a usual source of care and a personal doctor/nurse. Only 58% of publicly insured children reported family-centered care, compared with 76% of privately insured children (P < .001). This difference was significant after adjustment for sociodemographic characteristics (public vs private AOR 0.87; 95% CI 0.77–0.99).ConclusionsSignificant medical home disparities exist between publicly and privately insured children, driven primarily by disparities in family-centered care. Efforts to promote the medical home must recognize and address determinants of family-centered care.     

Prevalence and characteristics of children with special health care needs

BACKGROUND: Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed. OBJECTIVE: To provide national estimates of the number of children with SHCNs and their characteristics, including an assessment of how well their needs are being met. SETTING: The United States. PARTICIPANTS: Interviews were conducted by telephone with the families of 38 866 children with SHCNs younger than 18 years using the State and Local Area Integrated Telephone Survey platform developed by the Centers for Disease Control and Prevention, Atlanta, Ga. MAIN OUTCOME MEASURES: Prevalence of SHCNs, demographic and socioeconomic correlates of SHCNs, access to care, satisfaction with care, and impact on the family. RESULTS: An estimated 12.8% of US children experienced an SHCN in 2001. Prevalence was highest among boys, school-age children, and children in lower-income families. A substantial minority of these children experienced unmet health needs (17.7%) or lacked critical elements of family-centered health care (33.5%). The impact on families was pronounced, as 20.9% reported their child's health care caused financial problems, and 29.9% reported cutting back or quitting work because of their child's condition. These adverse child- and family-level impacts were concentrated among low-income and uninsured children with SHCNs. CONCLUSIONS: Children with SHCNs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.     

Parental Limited English Proficiency and Health Outcomes for Children With Special Health Care Needs: A Systematic Review

BackgroundOne in 10 US adults of childbearing age has limited English proficiency (LEP). Parental LEP is associated with worse health outcomes among healthy children. The relationship of parental LEP to health outcomes for children with special health care needs (CSHCN) has not been systematically reviewed.ObjectiveTo conduct a systematic review of peer-reviewed literature examining relationships between parental LEP and health outcomes for CSHCN.Data SourcesPubMed, Scopus, Cochrane Library, Social Science Abstracts, bibliographies of included studies. Key search term categories: language, child, special health care needs, and health outcomes.Eligibility CriteriaUS studies published between 1964 and 2012 were included if: 1) subjects were CSHCN; 2) studies included some measure of parental LEP; 3) at least 1 outcome measure of child health status, access, utilization, costs, or quality; and 4) primary or secondary data analysis.MethodsThree trained reviewers independently screened studies and extracted data. Two separate reviewers appraised studies for methodological rigor and quality.ResultsFrom 2765 titles and abstracts, 31 studies met eligibility criteria. Five studies assessed child health status, 12 assessed access, 8 assessed utilization, 2 assessed costs, and 14 assessed quality. Nearly all (29 of 31) studies used only parent- or child-reported outcome measures, rather than objective measures. LEP parents were substantially more likely than English-proficient parents to report that their CSHCN were uninsured and had no usual source of care or medical home. LEP parents were also less likely to report family-centered care and satisfaction with care. Disparities persisted for children with LEP parents after adjustment for ethnicity and socioeconomic status.Conclusions and ImplicationsParental LEP is independently associated with worse health care access and quality for CSHCN. Health care providers should recognize LEP as an independent risk factor for poor health outcomes among CSHCN. Emerging models of chronic disease care should integrate and evaluate interventions that target access and quality disparities for LEP families.     

Community Health Centers: Medical Homes for Children?

ObjectiveTo explore medical home attributes of community health centers (CHCs) that provide care to low-income children nationwide compared to other providers for the poor.MethodsCross-sectional study of children aged 0 to 17 years in the Medical Expenditure Panel Survey (MEPS; 2003 to 2009) who resided in families living at <200% of the federal poverty level (FPL) and had visits to a primary care setting. CHC visits were defined as a visit to a neighborhood/family health center, rural health clinic, or community health center. Independent measures included provider type, age, gender, race/ethnicity, insurance, FPL, number of parents at home, language, maternal education, health status, and special health care need. Dependent measures included 4 medical home attributes: accessibility, and family-centered, comprehensive, and compassionate care.ResultsCHCs typically serve low-income children who are publicly insured or uninsured, come from racial/ethnic minority groups, and have poorer health status. Eighty percent to 90% of parents visiting both CHCs and other primary care providers rated high levels of family-centered, comprehensive, and compassionate care. However, CHCs had a 10% to 18% lower rating of accessibility (after-hours care, telephone access) even after controlling for sociodemographic characteristics. Racial/ethnic disparities existed at both settings, but these patterns did not differ between CHCs and other settings.ConclusionsOn the basis of parental reports, CHCs received similar ratings to other primary care providers for family-centered, comprehensive, and compassionate care, but lower ratings for accessibility. Further studies should examine strategies for practice transformation in CHCs to improve patient satisfaction and accessibility to optimize child health outcomes.     

Special needs children with speech and hearing difficulties: prevalence and unmet needs

ObjectiveThe purpose of this study was to establish prevalences and sociodemographic characteristics associated with parent-reported speech and hearing difficulties among children with special health care needs (CSHCN); determine unmet needs for therapy, hearing aids, and communication devices; and examine the association between unmet needs and resources such as health insurance, early intervention/special education, and a medical home.MethodsData were analyzed for 300 910 children without special health care needs and 40 723 CSHCN from the 2005–2006 National Survey of Children with Special Health Care Needs. Prevalence, sociodemographic characteristics, and unmet needs for 7132 CSHCN with speech difficulties and 1982 CSHCN with hearing difficulties were assessed. Logistic regression was used to determine the associations between unmet needs for therapy or hearing/communication devices and resources for addressing needs for therapy, hearing, and communication aids.ResultsThe parent-reported prevalence of speech difficulty among CSHCN in the general population was 2.9% and approximately 20% among all CSHCN, in contrast to the lower prevalence of hearing difficulty (0.7% and 5%, respectively). Relative unmet need was greatest for communication devices and least for hearing aids. The strongest association with reducing unmet needs was having a medical home, and the most significant aspect of medical home was having effective care coordination.ConclusionsHaving a medical home is significantly associated with fewer unmet needs for therapy and hearing/communication devices among CSHCN with speech and hearing difficulties. Care coordination may constitute an important factor that allows the primary care provider to link with services that CSHCN with communication problems require.     

School-based health centers and pediatric practice

School-based health centers (SBHCs) have become an important method of health care delivery for the youth of our nation. Although they only represent 1 aspect of a coordinated school health program approach, SBHCs have provided access to health care services for youth confronted with age, financial, cultural, and geographic barriers. A fundamental principle of SBHCs is to create an environment of service coordination and collaboration that addresses the health needs and well-being of youth with health disparities or poor access to health care services. Some pediatricians have concerns that these centers are in conflict with the primary care provider's medical home. This policy provides an overview of SBHCs and some of their documented benefits, addresses the issue of potential conflict with the medical home, and provides recommendations that support the integration and coordination of SBHCs and the pediatric medical home practice.     

Coping Among Parents of Children With Special Health Care Needs With and Without a Health Care Home

IntroductionHaving a health care home has been shown to be associated with positive health outcomes for children with special health care needs (CSHCN), but its relationship to parental coping has not been established. The purpose of this study was to explore the health care home as a process of care related to parental coping with day-to-day demands of raising a CSHCN.MethodData are from a sample of 18,352 CSHCN in the 2007 National Survey of Children’s Health. Using the Behavioral Model of Health Services Use as a framework, this secondary analysis explored relationships between child and household factors and parental coping among CSHCN with and without a health care home.ResultsCSHCN in a health care home were more likely to have parents who were coping well. Parents who received sufficient care coordination were more satisfied with provider communication, and those who reported that care was family-centered reported better coping.DiscussionResults suggest that the health care home represents a process of care that may help families manage the daily demands of caring for CSHCN through family-centered care, provider-to-provider communication, and provision of care coordination.     

Providing a primary care medical home for children and youth with cerebral palsy

All primary care providers will care for children with cerebral palsy in their practice. In addition to well-child and acute illness care, the role of the medical home in the management of these children includes diagnosis, planning for interventions, authorizing treatments, and follow-up. Optimizing health and well-being for children with cerebral palsy and their families entails family-centered care provided in the medical home; comanagement is the most common model. This report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health care needed by all children.     

Parent's language of interview and access to care for children with special health care needs.

OBJECTIVE: To examine the association between the parent's language of interview and the access to care for children with special health care needs (CSHCN). METHODS: We used the 2001 National Survey of Children with Special Health Care Needs to compare socio-demographic characteristics and health care access variables among CSHCN with parents who interviewed in English and another language. Additional multivariate analyses explored the effect of language of interview on access to health care for the subgroup of Hispanic respondents. RESULTS: CSHCN with non-English-speaking parents were from less-educated and lower-income families and were more likely to lack insurance and have conditions that greatly affected their activities. These children were also more likely to have inadequate insurance (odds ratio [OR]=11.29), have an unmet need for family support services (OR=1.88), lack a personal doctor or nurse (OR=1.98), lack a usual source of care (OR=1.89), and lack family-centered care (OR=1.74). Non-English-speaking parents were more likely to report having employment consequences (OR=1.94) and spending over $500 out-of-pocket annually on the child's health care needs (OR=1.49). The likelihood of Hispanic children experiencing health care access barriers compared with non-Hispanic children was reduced when language was controlled for and several disparities between Hispanic children and other children became insignificant. CONCLUSIONS: CSHCN with non-English-speaking parents were more likely to be from disadvantaged families and to experience barriers to access than were CSHCN with English-speaking parents. Systems of care for CSHCN should consider the needs and challenges experienced by families whose primary language is not English.     

Role of the pediatrician in family-centered early intervention services

There is growing evidence that early intervention services have had a positive influence on the developmental outcome of children with established disabilities or those considered "at risk" for disabilities and their families. Various federal and state statutes now mandate that community-based, coordinated, multidisciplinary, family-centered programs be established, which are accessible to serve children and families in need. The pediatrician, in close collaboration with the family and the early intervention team, plays a critical role in guiding the clinical and developmental aspects of the early intervention services provided. This role can be best served in the context of providing a medical home for children with special health care needs. The purpose of this statement is to assist the pediatrician in assuming a proactive role on the multidisciplinary team providing early intervention services.     

Home care of children and youth with complex health care needs and technology dependencies

Children and youth with complex medical issues, especially those with technology dependencies, experience frequent and often lengthy hospitalizations. Hospital discharges for these children can be a complicated process that requires a deliberate, multistep approach. In addition to successful discharges to home, it is essential that pediatric providers develop and implement an interdisciplinary and coordinated plan of care that addresses the child's ongoing health care needs. The goal is to ensure that each child remains healthy, thrives, and obtains optimal medical home and developmental supports that promote ongoing care at home and minimize recurrent hospitalizations. This clinical report presents an approach to discharging the child with complex medical needs with technology dependencies from hospital to home and then continually addressing the needs of the child and family in the home environment.     

School-based health centers in an era of health care reform: building on history

School-based health centers (SBHCs) provide a variety of health care services to youth in a convenient and accessible environment. Over the past 40 years, the growth of SBHCs evolved from various public health needs to the development of a specific collaborative model of care that is sensitive to the unique needs of children and youth, as well as to vulnerable populations facing significant barriers to access. The SBHC model of health care comprises of on-school site health care delivery by an interdisciplinary team of health professionals, which can include primary care and mental health clinicians. Research has demonstrated the SBHCs' impacts on delivering preventive care, such as immunizations; managing chronic illnesses, such as asthma, obesity, and mental health conditions; providing reproductive health services for adolescents; and even improving youths' academic performance. Although evaluation of the SBHC model of care has been complicated, results have thus far demonstrated increased access to care, improved health and education outcomes, and high levels of satisfaction. Despite their proven success, SBHCs have consistently faced challenges in securing adequate funding for operations and developing effective financial systems for billing and reimbursement. Implementation of health care reform (The Patient Protection and Affordable Care Act [P.L. 111-148]) will profoundly affect the health care access and outcomes of children and youth, particularly vulnerable populations. The inclusion of funding for SBHCs in this legislation is momentous, as there continues to be increased demand and limited funding for affordable services. To better understand how this model of care has and could further help promote the health of our nation's youth, a review is presented of the history and growth of SBHCs and the literature demonstrating their impacts. It may not be feasible for SBHCs to be established in every school campus in the country. However, the lessons learned from the synergy of the health and school settings have major implications for the delivery of care for all providers concerned with improving the health and well-being of children and adolescents.     

Racial and ethnic disparities in access to care for children with special health care needs.

OBJECTIVE: Numerous studies have examined racial and ethnic differences in access to and utilization of health services. However, few studies have addressed these issues with respect to children with special health care needs. This study examines whether disparities in access and utilization are present among black, white, and Hispanic children identified as having special health care needs. METHODS: We analyzed data on 57 553 children younger than 18 years old included in the 1994-95 National Health Interview Survey on Disability. Of these, 10 169, or 17.7% of the sample, were identified as having an existing special health care need. Bivariate and multivariate analyses were used to assess how race and ethnicity are related to measures of access and utilization, such as usual source of care, missed care, and use of physician and hospital services. RESULTS: Our analyses show that among children with special health care needs, minorities were more likely than white children to be without health insurance coverage (13.2% vs 10.3%; P <.01), to be without usual source of care (6.7% vs 4.3%; P <.01), and to report inability to get needed medical care (3.9% vs 2.8%; P <.05). Also, white children with special health care needs were more likely than their minority counterparts to have used physician services (88.6 vs 85.0; P <.01); however, minority children with special health care needs were more likely to have been hospitalized during the past year (7.6% vs 6.3%; P < 0.5). After adjustments for confounding variables (income, insurance coverage, health status, and other variables), racial and ethnic differences in access and utilization were attenuated but remained significant for several measures (without a usual source of care, receipt of care outside of a doctor's office or HMO, no regular clinician, no doctor contacts in past year, and volume of doctor contacts). Gaps in access were more frequent and generally larger for Hispanic children with special health care needs. CONCLUSIONS: Our analysis indicates that access and utilization disparities remain between white and minority children with special health care needs, with Hispanic children experiencing especially disparate care.     

Family-centered care coordination for children with special needs across multiple settings

Care coordination is a process that involves assessment, planning, implementation, evaluation, education, monitoring, support, and advocacy. Pediatric nurse practitioners (PNPs) are well positioned to coordinate care but may not be well educated about potential conflicts of interest in balancing cost-containment constraints with obtaining maximum quality and quantity of care for children and families with complex needs. The philosophy of family-centered care is embodied in some care coordination models and absent in others. PNPs who aim to support families of children with special health care needs need to understand the complexity of interacting with multiple care coordination models across health and educational settings. PNPs may act as change agents to infuse family-centered care principles into existing and future care coordination models.