Defining the “value-added” of advanced practice nurse care coordination for children with complex special health care needs

Background: Children with complex special health care needs (CCSHCN) require high levels of health care services from multiple providers across systems of care.  The costs of care for these children are approximately three times higher, with more service utilization and more costs per capita than children in the general population. There is increasing evidence that care coordination in a health care home model can improve functional outcomes and decrease utilization of hospitalizations and emergency department (ED) visits for children with special health care needs (CSHCN). Despite this evidence, established guidelines for education, experience, or competencies of care coordinators in the health care home model or documented strategies for integrating this role does not exist.

Methods: TeleFamilies is a three-armed randomized controlled trial (NIH R01NR010883) testing the effectiveness of a full-time Pediatric Nurse Practitioner (APRN) telehealth care coordinator for CCSHCN. Interactions between APRN and families of CCSHCN are conducted by telephone or video telehealth. Exceptions include interactions during pediatric clinic visits, hospitalizations and school visits. A telehealth nursing encounter form is completed after each contact and documents the person(s) involved, activities completed and encounter outcome. Patterns of utilization are analyzed by cohort for variance in frequency and intensity of service utilization over the 2.5 year enrollment period.

Results: Parents initiated the majority of encounters with most frequent reasons included care coordination, acute and chronic condition management and support.  Almost 15% of APRN telehealth encounters required an advanced scope of practice that prevented a clinic visit. Autonomy of the APRN diminished parent need for multiple team contacts. Unique case examples illustrate the complexity and varied of care coordination encounters for subjects with multiple conditions.

Conclusion: The TeleFamilies APRN care coordinator role illustrates the competencies required for high-complexity care coordination and the potential to manage healthcare utilization with high-quality care.