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.     

Care coordination in the medical home: integrating health and related systems of care for children with special health care needs

Care coordination is a process that facilitates the linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health. Care coordination for children with special health care needs often is complicated because there is no single point of entry into the multiple systems of care, and complex criteria frequently determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care physicians have a vital role in the process of care coordination, in concert with the family.     

The medical home as a mediator of the relation between mental health symptoms and family burden among children with special health care needs

ObjectiveThis study explores the role of medical home as a mediator of the relationship between emotional and behavioral difficulties among CSHCN and financial- and employment-related burden experienced by their families.MethodsData were obtained from the 2005–2006 NS-CSHCN, a nationally representative cross-sectional survey of 40 465 CSHCN. Family burden was measured using parent-reported financial problems and changes in family member employment resulting from the child’s needs. Emotional and behavioral symptoms were reported by parents using 3 binary items capturing difficulty with depression, anxiety, disordered eating, and emotional or behavior problems. Medical home was measured according to the framework of the American Academy of Pediatrics. Bivariate and multivariate analyses were used to explore the role of medical home in the relation between mental health symptoms and family burden.ResultsA smaller proportion of CSHCN with emotional or behavioral difficulties had a medical home or related components compared to CSHCN generally, and a greater proportion of their families experienced burdens. Multivariate analyses showed that the mediated effect of care coordination on the relation between emotional or behavioral symptoms and family burden explained 18% to 35% of the total effect of these symptoms on financial problems and employment changes. Overall medical home access explained 16% to 28% of the total effect of symptoms on burden.ConclusionsMedical home access, and care coordination in particular, may partially mediate the relation between emotional and behavioral symptoms and financial hardship. Future efforts to implement the medical home model may benefit from an increased focus on care coordination as a means of reducing these burdens.     

Helping families raise children with special health care needs at home

One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local family-support services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services. The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members.     

Profiling health and health-related services for children with special health care needs with and without disabilities

ObjectiveThe 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.MethodsSecondary 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.ResultsChildren 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.ConclusionCSHCN 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.     

Managed care and children with special health care needs

The implementation of managed care for children with special health care needs is often associated with apprehension regarding new barriers to health care services. At times, these barriers may overshadow opportunities for improvement. This statement discusses such opportunities, identifies challenges, and proposes active roles for pediatricians and families to improve managed care for children with special health care needs.     

Coordination of care for children with special health care needs

PURPOSE OF REVIEW: Coordination of care is an essential function of pediatric primary care, needed most by children with special health care needs (CSHCN). Although complex, its necessity has become better recognized with the recent increase in attention in the United States to the comprehensive "medical home" model of care. RECENT FINDINGS: Coordination is highly dependent on effective communication within the health care system and between the health care system and the larger community. While coordination may best be undertaken at the level of the physician practice, a team approach involving nonphysician staff and families as primary participants may be the best option in many cases. More attention is being paid at the health policy level to the implementation of coordination of care, although solutions to reimbursement barriers have yet to be implemented. Considerable progress on methods to improve care coordination in the primary care practice setting has been made recently. Many of these efforts have used quality improvement techniques adapted from the business world. Emerging measures of the process of care coordination are also being developed, although few studies have been published to date showing a positive impact of care coordination. SUMMARY: The value of coordination of care as an essential part of medical care for children with special health care needs is becoming widely recognized. Methods to implement it within pediatric primary care practices are being developed, although more data demonstrating its value are needed to inform policy changes.     

Procedural sedation for children with special health care needs

Children with special health care needs represent a growing percentage of pediatric patients treated in all emergency departments. Substantial literature exists concerning the medical treatment of these patients, but there is little written describing the management of procedural sedation or analgesia in this population. This article examines the unique anatomic and physiologic implications of procedural sedation or analgesia management in children with special health care needs.     

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.