PEDIATRICS Vol. 107 No. 6 June 2001, p. e99
ELECTRONIC ARTICLE:
Deaths Attributed to Pediatric Complex Chronic Conditions:
National Trends and Implications for Supportive Care Services
Received Nov 14, 2000; accepted Jan 30, 2001.
,, §,
,,, , and
From the * Child Health Institute, University of Washington;
Departments of Background. Children with complex
chronic conditions (CCCs) might benefit from pediatric supportive care
services, such as home nursing, palliative care, or hospice, especially
those children whose conditions are severe enough to cause death. We do
not know, however, the extent of this population or how it is changing
over time.
Objectives. To identify trends over the past 2 decades in
the pattern of deaths attributable to pediatric CCCs, examining counts
and rates of CCC-attributed deaths by cause and age (infancy: <1 year
old, childhood: 1-9 years old, adolescence or young adulthood: 10-24 years old) at the time of death, and to determine the average number of
children living within the last 6 months of their lives.
Design/Methods. We conducted a retrospective cohort study
using national death certificate data and census estimates from the
National Center for Health Statistics. Participants included all people
0 to 24 years old in the United States from 1979 to 1997. CCCs
comprised a broad array of International Classification of
Diseases, Ninth Revision codes for cardiac, malignancy,
neuromuscular, respiratory, renal, gastrointestinal, immunodeficiency,
metabolic, genetic, and other congenital anomalies. Trends of counts
and rates were tested using negative binomial regression.
Results. Of the 1.75 million deaths that occurred in 0- to
24-year-olds from 1979 to 1997, 5% were attributed to cancer CCCs,
16% to noncancer CCCs, 43% to injuries, and 37% to all other causes
of death. Overall, both counts and rates of CCC-attributed deaths have
trended downward, with declines more pronounced and statistically significant for noncancer CCCs among infants and children, and for
cancer CCCs among children, adolescents, and young adults. In 1997, deaths attributed to all CCCs accounted for 7242 infant deaths, 2835 childhood deaths, and 5109 adolescent deaths. Again, in 1997, the
average numbers of children alive who would die because of a
CCC within the ensuing 6-month period were 1097 infants, 1414 children, and 2548 adolescents or young adults.
Conclusions. Population-based planning of pediatric
supportive care services should use measures that best inform our need
to provide care for time-limited events (perideath or bereavement care)
versus care for ongoing needs (home nursing or hospice). Pediatric
supportive care services will need to serve patients with a broad range
of CCCs from infancy into adulthood.
Pediatrics and § Rehabilitative Medicine, University
of Washington; Children's Hospital and Regional Medical Center; and
the ¶ Department of Epidemiology, University of Washington, Seattle,
Washington.
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