Care coordination at a pediatric accountable care organization (ACO): A qualitative analysis.

OBJECTIVE: Care coordinators may help manage care for children with chronic illness. Their role in pediatric epilepsy care is understudied. We aimed to qualitatively describe the content of a care coordination intervention for children with epilepsy.

METHODS: We conducted nine semi-structured interviews and one focus group with care coordinators at a pediatric accountable care organization (ACO) in Ohio. The care coordinators used a modified version of a published care coordination checklist for children with epilepsy (Patel AD, 2014). We analyzed transcripts using thematic analysis. We focused on (1) the content of the intervention; and (2) perceptions of facilitators and barriers to improve outcomes, with an emphasis on epilepsy specific facilitators and barriers.

RESULTS: Care coordinators interacted with children and families in multiple contexts (phone calls, physician visits, home visits), and included relationship building (developing rapport and trust between families and the health system), communication (transmission of information between the child, family, physician, and other care providers), and service (help with housing, transportation, scheduling, liaison with community resources, etc.). Facilitators and barriers of care coordination included factors related to parents, physicians, health system, payers, and community. Epilepsy-specific barriers included stigma (felt & enacted) and the anxiety associated with clinical uncertainty. Epilepsy related facilitators included a seizure action plan, written educational materials, and an epilepsy specific care coordination checklist.

CONCLUSION: In addition to facilitators and barriers common to many care coordination programs, pediatric epilepsy care coordinators should be particularly aware of epilepsy stigma and clinical uncertainty. A care coordination checklist and epilepsy focused educational materials written to accommodate people with low health literacy may provide additional benefit. Further research is required to understand the effect of care coordination on costs, use of health services, seizure control, and quality of life for children with epilepsy.