Avoiding Unneeded Emergency Department Visits: Listening to Parents of Children with Medical Complexity

Background: Children with medical complexity (CMC) represent 8% of the children in the United States, but account for 40% of child health spend within State Medicaid programs. Both parents and hospitals agree that Emergency... [ view full abstract ]

Background: Children with medical complexity (CMC) represent 8% of the children in the United States, but account for 40% of child health spend within State Medicaid programs. Both parents and hospitals agree that Emergency Departments (EDs) are inefficient in meeting the needs of CMC. As part of a collaborative initiative, we asked parents to share strategies they use to avoid unneeded ED visits.

Methods: Interviews about ED utilization occurred during advisory groups of parents whose children were enrolled in the Coordinating All Resources Effectively (CARE) project, a multicenter learning collaborative supported through the Center for Medicare and Medicaid Innovation. Eighteen parents from our hospital-based complex care clinic and five local pediatric practices were interviewed, all of whom have a CMC that necessitates frequent use of medical care. Parents were interviewed using open-ended questions.  Process improvement team then analyzed responses.

Results: Parents interviewed during these advisory meetings indicated that they developed their own internal “decision trees” based upon experiences with their children and advice from trusted professionals and family members.  All felt that, as a result, their utilization of the ED had decreased since their child was first diagnosed. All indicated that they had formed at least one strong relationship with a staff member (not necessarily a medical professional) at a medical office that they could contact for second-level “triage” regarding decisions to go to the ED.

Conclusions: Reduction of ED utilization for parents of CMC may result from earlier connection with parents after initial diagnosis. Interviews indicate that this connection should be to a consistent and trustworthy individual who the parent can access directly. Additionally, interviews indicate that practices could help newly diagnosed families with CMC by standardizing in practice what parents already do: developing a personalized “decision tree” regarding ED utilization for each CMC.