Predictors of Coordinated and Comprehensive Care Within a Medical Home for Children with Special Healthcare (CHSCN) Needs

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Frontiers in Public Health




The purpose of this study was to examine predictors of coordinated and comprehensive care within a medical home among children with special health care needs (CSHCN). The latest version of the National Survey of Children with Special Health Care Needs (NS-CSHCN) employed a national random-digit-dial sample whereby US households were screened, resulting in 40,242 eligible respondents. Logistic regression analyses were performed modeling the probability of coordinated, comprehensive care in a medical home based on shared decision-making and other factors. A total of 29,845 cases were selected for inclusion in the model. Of these, 17,390 cases (58.3%) met the criteria for coordinated, comprehensive care in a medical home. Access to a community-based service systems had the greatest positive impact on coordinated, comprehensive care in a medical home. Adequate insurance coverage and being White/Caucasian were also positively associated with the dependent variable. Shared decision-making was reported by 72% of respondents and had a negative, but relatively negligible impact on coordinated, comprehensive care in a medical home. Increasing age, non-traditional family structures, urban residence, and public insurance were more influential, and negatively impacted the dependent variable. Providers and their respective organizations should seek to expand and improve health and support services at the community level.

In the late 1990s, the definition for disability was re-evaluated to expand its meaning to facilitate a shift in care options. A national agenda was set to focus efforts on providing children with special health care needs (CSHCN) and their families with a more comprehensive approach to services including a move to community-based and family-centered care (1). This continues today, and is reflected in Health People 2020 (HP2020), as a key outcome is care for CSHCN that is coordinated and focused on the family (2). However, HP2020 also states that access to adequate and affordable health care is an important factor in one's quality of life (2). People with disabilities face many barriers to accessing care that is adequate, accessible, coordinated, and family centered (3). Individuals living with disabilities, compared to those without, are more negatively impacted by a lack of access to health care services (4). Previously, parents and caregivers cited access to care as one of the primary factors impeding the overall health and quality of life of their family member living with a disability (5). Access to care is mediated by many barriers. Approximately half of individuals with disabilities cannot afford health care (3). Families have noted that access to many health care services is hindered by cost (6). Many services available to families are not covered by insurance plans, which leaves the burden of cost on family members or requires families to attempt to provide some services at home (5). The American Academy of Pediatrics (7) recommends care coordination as one strategy to alleviate challenges experienced by families caring for CSHCN.

Care coordination is defined by the American Academy of Pediatrics as “a process that links CSHCN and their families with appropriate services and resources in a coordinated effort to achieve good health” (7). Care coordination is important because CSHCN receive services from a variety health care and service providers. Needs are varied and unique, which requires a multifaceted approach. Furthermore, care coordination requires knowledge of a diverse set of medical and social services, communication with professionals, and close monitoring (8). Adequate and appropriate care coordination requires a well-developed health care plan between the families and health care provider (9). Care coordination promotes functionality and decreases the likelihood a CSHCN experiences an unmet health service need (10).

Family decision-making and adequate health insurance are listed as quality indicators for a higher quality service system within a community-oriented approach (11). These indicators can increase ease of service utilization and decrease dependence on emergency-based health services (12). Additionally, reduced access is associated with poorer health status. Children with special healthcare needs are less likely to participate in community and school activities if presenting with poorer health status and experiencing more functional limitations (13). It has been recommended that health care and community providers focus on incorporating family centered, coordinated care to improve a child's ability to be an active participant in community activities. When care coordination is lacking, family involvement in health care decisions is limited. The child's needs and the needs of the family are often left unmet. Because of the disparities which exist among CSHCN, an ecological (community-based) approach to care is recommended (14).

Children with special healthcare needs often lack proper basic care due to inadequate insurance coverage (15). When coverage is improved, CSHCN are still faced with barriers to access services such as lack of guidance, fewer service providers, and higher costs for specialized services (16). However, increasing access to additional services in the community can improve the adequacy of insurance coverage and lessen the overall impact of caring for a CSHCN on the family (17).

The Maternal and Child Health Bureau (MCHB) has consolidated these important aspects of care for CSHCN into six core outcomes that reflect both potential barriers and components of effective care: shared decision-making, coordinated and comprehensive care in a medical home, adequate insurance, early and continuous screening, ease of use of community-based services, and transition services (18). Of these six outcomes, CSHCN receiving care in a medical home is the most important in the receipt of quality care. The American Academy of Pediatrics defines a medical home as “a course of ongoing, comprehensive, coordinated, family-centered care in the child's community” (19). In the MCHB definition, coordinated and comprehensive care within a medical home has five components: usual source of care, personal doctor or nurse, care coordination, family-centered care, and getting needed referrals (18). The key difference in these definitions is the context of the community. Access to community-based services is an essential component of improving care coordination and improving the overall health care of individuals with disabilities (3).

Due to the importance of coordinated and comprehensive care within a medical home among CSHCN, the purpose of this study was to examine predictors of this outcome. We hypothesize that access to community-based services and shared decision-making among providers and families will significantly improve the likelihood that families caring for CSHCN received coordinated and comprehensive care within a medical home. However, other factors such as insurance coverage, family financial burden, hours spent caring for the child, and parental education may mediate this relationship. Therefore, we used logistic regression to examine the relationship between community-based care and care coordination while accounting for these potential covariates.