Family quality-of-life and cost impact of a California pediatric palliative care program

Background: In 2009, California established the Partners for Children (PFC) program, a waiver initiative that provides family-centered, coordinated, and concurrent palliative and curative care to children with life-threatening conditions in a community-based setting. Objectives: Assess family quality-of-life and cost impacts of PFC. Methods: We measured family satisfaction and quality-of-life indicators through original questionnaires administered to primary caregivers at enrollment and subsequent six-month periods. We compared medical and pharmaceutical claims for children 12 months prior to enrollment with claims during PFC participation. Results: Caregivers reported significant reductions in tension, nervousness, and worry six months after their children enrolled in PFC. More than 95 percent of families said program services directly helped cause these quality-of-life changes. All families said they would recommend PFC to others. Analysis of 69 children who were enrolled in PFC for at least 60 days showed substantial reduction in post-enrollment costs of about $2,800 PMPM. Conclusion: PFC is succeeding financially and humanistically using medical home principles. Coordinated care allows for service provision in a more cost-effective community setting with 24/7 nurse line. Families are dealing with their child's life-limiting condition but report less stress and worry rather than the expected deterioration in quality of life. PFC is an important test for coordinated, family-centered concurrent palliative and curative care, a model now required by the Affordable Care Act. PFC's success could have important implications for program expansion in California and elsewhere.