Cost, Satisfaction, and Policy Effects of a Pediatric Palliative Care Program

Background

California implemented a Section 1115 Medicaid waiver pilot called Partners for Children (PFC) from 2010-2012 to provide concurrent palliative and curative care to children with life-threatening conditions in home and community settings through enhanced care coordination and service provision. We analyzed PFC’s effect on health care costs and family and provider satisfaction.

Methods

Paid claims and administrative data of PFC enrollees were analyzed to calculate cost impact. Surveys with enrollees’ primary caregivers measured satisfaction and PFC’s impact on family experience. Surveys with care coordinators, hospice/home health agencies and physicians assessed provider satisfaction and engagement.

Results

Over the three-year pilot, 132 children enrolled in the program for at least 60 days. Mean health care costs per enrollee per month (PEPM) were reduced by $3,331, driven by a $4,897 PEPM decrease in inpatient care costs. Families exhibited satisfaction with PFC and believed program services helped reduce or control their child’s pain and other symptoms, as well as their own trouble sleeping and level of worry. Providers expressed satisfaction with the program but visibility was a problem among prospective referring physicians, two-thirds of whom were not familiar with PFC.

Conclusions

California’s concurrent care demonstration yielded major cost savings by enhancing care coordination and home-based services to avoid preventable hospitalizations. The ability to remain at home and confidently rely on program services improved children’s and families’ experiences. PFC has achieved program status but must broaden its reach by improving visibility among providers who serve as enrollment channels for families confronting a child’s life-threatening illnesses.