Complex home care: Part I--Utilization and costs to families for health care services each year.

As many as 120 persons per million people in the United States are dependent on the lifelong, complex, technology-based care of home parenteral nutrition (HPN) infusions. However, data for costs paid by families for HPN-related health care services and for non-reimbursed expenditures are rarely tabulated and most often underestimated. The goals of this study were to describe health care services used by families to manage HPN, report the frequency of each service used annually, and estimate the average annual non-reimbursed costs to families for these health services. The numerous and varied types of services reported and the time required to coordinate and access HPN services illustrates the challenges faced by patients and their family caregivers. The lack of a coordinated and efficient system for delivering complex chronic care results in poorer outcomes for HPN patients and their families on-reimbursed costs and the extensive amount of time required to coordinate multi-professional services negatively impacts the clinical outcomes and quality of life of complex chronic home care.