Pediatric deaths attributable to complex chronic conditions: A population-based study of Washington State, 1980-1997

Robert Wood Johnson Clinical Scholars Program, University of Washington, Seattle, 98195-7183, USA.
Pediatrics (Impact Factor: 5.47). 08/2000; 106(1 Pt 2):205-9.
Source: PubMed


Advances in medical technology and public health are changing the causes and patterns of pediatric mortality. To better inform health care planning for dying children, we sought to determine if an increasing proportion of pediatric deaths were attributable to an underlying complex chronic condition (CCC), what the typical age of CCC-associated deaths was, and whether this age was increasing.
Population-based retrospective cohort from 1980 to 1997, compiled from Washington State annual censuses and death certificates of children 0 to 18 years old.
For each of 9 categories of CCCs, the counts of death, mortality rates, and ages of death.
Nearly one-quarter of the 21 617 child deaths during this period were attributable to a CCC. Death rates for the sudden infant death syndrome (SIDS), CCCs, and all other causes each declined, but less so for CCCs. Among infants who died because of causes other than injury or SIDS, 31% of the remaining deaths were attributable to a CCC in 1980 and 41% by 1997; for deaths in children 1 year of age and older, CCCs were cited in 53% in 1980, versus 58% in 1997. The median age of death for all CCCs was 4 months 9 days, with substantial differences among CCCs. No overall change in the age of death between 1980 to 1997 was found (nonparametric trend test).
CCCs account for an increasing proportion of child deaths. The majority of these deaths occur during infancy, but the typical age varies by cause. These findings should help shape the design of support care services offered to children dying with chronic conditions and their families.

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    • "In 2000, Feudtner and colleagues developed a definition for CCCs: “Any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center”[1]. Based on this definition, a comprehensive set of codes available at that time from the International Classification of Disease version 9 Clinical Modification (ICD-9-CM) system were identified as indicative of a CCC, and further categorized into 9 categories (cardiovascular, respiratory, neuromuscular, renal, gastrointestinal, hematologic or immunologic, metabolic, other congenital or genetic, and malignancy). "
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    ABSTRACT: Background The pediatric complex chronic conditions (CCC) classification system, developed in 2000, requires revision to accommodate the International Classification of Disease 10th Revision (ICD-10). To update the CCC classification system, we incorporated ICD-9 diagnostic codes that had been either omitted or incorrectly specified in the original system, and then translated between ICD-9 and ICD-10 using General Equivalence Mappings (GEMs). We further reviewed all codes in the ICD-9 and ICD-10 systems to include both diagnostic and procedural codes indicative of technology dependence or organ transplantation. We applied the provisional CCC version 2 (v2) system to death certificate information and 2 databases of health utilization, reviewed the resulting CCC classifications, and corrected any misclassifications. Finally, we evaluated performance of the CCC v2 system by assessing: 1) the stability of the system between ICD-9 and ICD-10 codes using data which included both ICD-9 codes and ICD-10 codes; 2) the year-to-year stability before and after ICD-10 implementation; and 3) the proportions of patients classified as having a CCC in both the v1 and v2 systems. Results The CCC v2 classification system consists of diagnostic and procedural codes that incorporate a new neonatal CCC category as well as domains of complexity arising from technology dependence or organ transplantation. CCC v2 demonstrated close comparability between ICD-9 and ICD-10 and did not detect significant discontinuity in temporal trends of death in the United States. Compared to the original system, CCC v2 resulted in a 1.0% absolute (10% relative) increase in the number of patients identified as having a CCC in national hospitalization dataset, and a 0.4% absolute (24% relative) increase in a national emergency department dataset. Conclusions The updated CCC v2 system is comprehensive and multidimensional, and provides a necessary update to accommodate widespread implementation of ICD-10.
    BMC Pediatrics 08/2014; 14(1):199. DOI:10.1186/1471-2431-14-199 · 1.93 Impact Factor
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    • "(a) & (b) Complex Chronic Conditions were defined utilizing the framework developed by Feudtner et al. as “any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care centre” [21,22]. This framework has been operationalized into a series of International Classification of Diseases (ICD) diagnoses (subdivided into nine organ system categories) for identifying CCCs using hospital discharge abstracts. "
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    ABSTRACT: Care giving for children with chronic diseases can lead to financial strain and compromised family well being. Little is known about whether these stresses lead to changes in residential movement patterns as they relate to income adequacy and proximity to care. We compared the residential movement patterns and associated changes in neighbourhood income of children with mild to severe chronic diseases compared with those that are healthy. A cohort of infants born from 2002--2007 in Ontario, Canada was followed for 5 years and divided into those with single- or multiple- body system complex chronic conditions (CCCs); low birth weight (LBW); asthma/recurrent wheeze (A/RW) and the control group of otherwise healthy children. Of 598,716 children studied, 15,207 had a single CCC, 3,600 multiple CCCs, 33,206 LBW, 57,137 A/RW and 489,566 were healthy. Lowest income quintile children were most likely to move residence. Compared with healthy controls, chronic disease cohorts, apart from those with asthma, were more likely to be born in the lowest income quintile neighbourhood and to move. Among children who moved, all chronic disease cohorts were significantly more likely to move to a low income quintile neighborhood (adjusted odds ratios for all chronic disease cohorts of 1.1-1.2). There were no differences across cohorts in residential movement close to a children's hospital. Young children with chronic conditions, particularly those born in low income neighbourhoods, are more likely to move residence than other healthy young children. However, it does not seem that proximity to specialized care is driving this movement. Further research is required to determine if these movement patterns impact the ability of children with chronic conditions to secure health services.
    International Journal for Equity in Health 08/2013; 12(1):62. DOI:10.1186/1475-9276-12-62 · 1.71 Impact Factor
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    • "Diagnoses were categorized according to complex chronic conditions (CCCs) and neurologic impairment (NI), utilizing International Classification of Diseases, 9th and 10th revision codes. CCCs were defined based on Feudtner’s list that incorporates any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or 1 organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center [17]. NI was based on Srivastava’s definition of diagnoses consistent with static or progressive neurological, genetic or other disease that typically results in either functional and/or intellectual impairment [18]. "
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    ABSTRACT: Background Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center. Methods A before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians. Results Total health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit. Conclusions Complex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.
    BMC Health Services Research 10/2012; 12(1):366. DOI:10.1186/1472-6963-12-366 · 1.71 Impact Factor
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