| Background: Children with medical complexity (CMC) include those who suffer from chronic, severe health conditions, substantial health service needs, and functional limitations which are often severe and require high health resource utilization. Such children have shown to have better health outcomes with care coordination (CC) by clinics and/or families, though the broader impact of CC on the child and their families is understudied.
Methods: This secondary data analysis of children (ages 0-17 years) with medical complexity utilizes the National Survey of Children with Special Health Care Needs (NS-CSHCN) from 2009-2010 to describe CC for CMC, including sources of assistance for CC and how types of CC affect families of CMC. We examined CC in terms of sources of assistance according to the following categories: clinical support, family/social network support, both clinical and
family/social network support, or no support. Data analyses included chi-square and t-tests to determine differences between CC dynamics, impact on child, impact on family, and household characteristic variables according to CC categories. Associations with receiving CC from clinics were explored using weighted bivariate analyses and multivariate logistic regression.
Results: Among the children with special health care needs, 6.57% were determined to be the most medically complex. Among CMC, the majority of parents reported receiving no CC support (66.47%), while others received CC support from clinical CC support (15.17%), both Clinical support and Family/Social Networks (10.56%), and family/social networks only
(7.80%). CMC not receiving CC support were more likely to report that they could have used extra help arranging or coordinating care compared those receiving CC from family/social network only, clinical only, or both. In multivariate models, parent/guardians that were dissatisfied with communication among the child’s doctor and other health care providers, and those receiving family-centered care were less likely to currently receive clinical CC. Those more likely to report currently receiving clinical CC had income below the federal poverty level, and a CMC that missed seven or more school days in the past month. In terms of age, clinical CC support is currently being used by younger CMC.
Discussion: These factors may assist clinical teams in identifying ways in which they can improve their CC efforts to impact the family positively. In addition to improving care, there is a need to reduce the number of CMC that do not have CC support to improve the quality of life of CMC and their families. |