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Objective. Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to determine what features were associated with home deaths. Design. A retrospective case series was conducted of all deaths that occurred to children age 0 to 18 years in Washington state from 1980 to 1998 using death certificate data, augmented with 1990 US Census data regarding median household income by zip code in 1989, to determine the site of death. Results. Of the 31 455 deaths identified in infants, children, and adults younger than 25 years, 52% occurred in the hospital, 17.2% occurred at home, 8.5% occurred in the emergency department or during transportation, 0.4% occurred in nursing homes, and 21.7% occurred at other sites. Among children who died as a result of some form of CCC (excluding injury, sudden infant death syndrome, and non-CCC medical conditions), the percentage of cases younger than 1 year who died at home rose slightly from 7.8% in 1980 to 11.6% in 1998, whereas the percentage of older children and young adults who had a CCC and died at home rose substantially from 21% in 1980 to 43% in 1998. Children who had lived in more affluent neighborhoods were more likely to have died at home. Using leukemia-related deaths as a benchmark, deaths as a result of congenital, genetic, neuromuscular, and metabolic conditions and other forms of cancer all were more likely to have occurred at home. Significant variation in the likelihood of home death, not explained by the individual attributes of the cases, also existed across the 39 counties in Washington state. Conclusions. Children who die with underlying CCCs increasingly do so at home. Age at death, specific condition, local area affluence, and the location of home all influence the likelihood of home death. These findings warrant additional study, as they have implications for how we envision pediatric palliative care, hospice, and other supportive services for the future. Pediatrics 2002;109:656-660; location of death, chronic illness, palliative care, end of life care, medical geography. ABBREVIATIONS. CCC, complex chronic condition; ICD-9, International Classification of Diseases, Ninth Revision; AOR, adjusted odds ratio; CI, confidence interval., In the realm of end-of-life care for adults, much emphasis has been placed on where death occurs. During the past few decades, several population-based studies have shown that--despite most patients' [...]

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: [is less than] 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 2001;107(6). URL: http://www.pediatrics.org/cgi/content/full/107/6/e99; chronic disease, causes of death, mortality, cohort studies, terminal care, hospice.