Deaths Attributed to Pediatric Complex Chronic Conditions: National Trends and Implications for Supportive Care Services

Abstract

ABSTRACT. 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. C hildren who are dying because of complex chronic conditions (CCCs)-such as cancer, cardiac malformations, cystic fibrosis, or neurodegenerative diseases-require special health care services. These supportive care services range broadly, from aggressive control of pain and effective symptom relief, to sensitive spiritual care and grief counseling, to respite and bereavement services for the family. The importance of providing such comprehensive care has recently been underscored by the American Academy of Pediatrics. 1 Accessing such care can be difficult, however, not only because of reluctance to confront dying openly with children and their families or because of a mismatch between the standard aggressive tertiary pediatric care practices and the philosophy of hospice or palliative care, but also because of a welter of logistic obstacles, such as a shortage of health care personnel trained to provide supportive care, inadequate funding, and constraining in...

The Prevalence and Diagnostic Utility of Systemic Inflammatory Response Syndrome Vital Signs in a Pediatric Emergency Department

“…Complex chronic conditions were identified by presence of validated ICD-9 codes in the visit's billing record. 13 …”

A Profile of Children with Complex Chronic Conditions at End of Life among Medicaid Beneficiaries: Implications for Health Care Reform

“…Children were identified as having a CCC if they had a diagnosis of a neuromuscular, cardiovascular, respiratory, renal, gastrointestinal, hematologic, metabolic, congenital, or cancer health condition based on an International Classification of Diseases, 9th Revision (ICD-9-CM) code as recommended by Feudtner et al 8 Duplicates and children who were not California residents were excluded from the sample. Our final sample size was 1423 children.…”

“…7 Previous studies have found that deaths among children with CCCs vary widely by type of health condition and age group. 5,8,9 The prevalence of children with CCCs in the inpatient hospital setting has increased, 10,11 and their EOL care in this setting is highly technical. 12 Accordingly, the average cost of health care services for these children ranges from $62,000 to $110,000 annually.…”

Differences associated with age, transfer status, and insurance coverage in end‐of‐life hospital care for children

“…Discharge disposition is known to vary by age, with older children with chronic conditions being more likely to use hospice services compared with infants. 8 A recent study suggests that deaths outside the hospital have become increasingly common for older children over time, with the expansion of EOL supportive services in communities to meet the needs of families with gravely ill children. 8 Length of Stay, Hospital Charges, and Mortality Related to Insurance Status In this study, insured children who were admitted and died had significantly longer hospital stays compared to uninsured children who were admitted and died.…”

“…8 A recent study suggests that deaths outside the hospital have become increasingly common for older children over time, with the expansion of EOL supportive services in communities to meet the needs of families with gravely ill children. 8 Length of Stay, Hospital Charges, and Mortality Related to Insurance Status In this study, insured children who were admitted and died had significantly longer hospital stays compared to uninsured children who were admitted and died. DRG diagnoses by payer were very similar among children who died, although it is possible that differences in length of stay by payer status may reflect differences in severity of illness at admission and/or processes of care during hospitalization, which could not be fully accounted for using diagnostic codes.…”