Pediatric cancer care also appears to be concentrated in specialty settings— nearly half (46 percent) of cancer-related ambulatory care is provided in hospital-based outpatient clinics and 58 percent of cancer-related hospital care takes place in urban, teaching hospitals (Table 5.1).

The implications of uninsuredness for children with cancer are dire given the complexity of care and its associated costs. An estimated 7 percent of cancer-related ambulatory care visits made from 1995 to 1999 by children were not covered by insurance, and 3 percent of cancer-related hospital discharges in 1997 lacked coverage (Table 5.1). Coverage of cancer-related ambulatory care visits is primarily through private insurance (62 percent) and to a lesser extent the Medicaid program (6 percent) (Table 5.1). Cancer-related hospital care is more heavily dependent on public programs—31 percent of hospitalizations were paid for by the Medicaid program and 60 percent were paid for by private insurance in 1997 (Table 5.1). Some low-income individuals and families who lack health insurance, but who are not eligible for Medicaid, “spend down” to become eligible for Medicaid to help pay for expensive hospitalizations. Pediatric cancer care tends to be intensive, lengthy, and costly. An estimated 18 percent of cancer-related hospitalizations had length of stays of 14 or more days (National Cancer Policy Board [NCPB] special tabulations). Total charges associated with cancer-related hospital care are very high; 22 percent of discharges had total charges of $40,000 and above in 1997 (NCPB special tabulations).

There have been relatively few studies of the costs associated with caring for children with cancer, but one study conducted in the early 1980s suggests that family out-of-pocket expenses add about 50 percent to the total cost of disease-related care and consumed 38 percent of gross annual family income (Bloom et al., 1985). Not measured are the broader costs incurred by the family, including lost wages and opportunity costs (e.g., lack of job advancement).

Initial Treatment of Childhood Cancer: The Intersection of Cancer Care and Research

It is generally recognized that children undergoing their initial treatment for cancer and their families have special needs that can best be met by specialized children’s cancer centers. Such centers use a team approach involving a variety of specialists— pediatric oncologists, surgeons, radiation oncologists, pediatric oncology nurses, nurse practitioners, psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators—who can support and educate the entire family. In recognition of improved outcomes associated with such specialized care, the American Academy of Pediatrics (AAP) recommends that

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