Remarkable advances in pediatric healthcare over the past century have substantially reduced overall childhood morbidity and mortality, while concomitantly enabling some children with complex chronic conditions (CCC) to survive and live longer. A clear definition of these CCCs is important for several reasons: to assess population-level temporal trends in the proportion of morbidity and mortality associated with CCCs; to assess patterns of healthcare utilization among patients with CCCs; and to perform individual-level risk adjustments for patients’ CCC status in studies of healthcare processes and outcomes.
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).
The CCC classification system (v1) can be used to either examine a particular CCC category or to identify patients with multiple CCC categories. The CCC system was initially applied to studying patterns of pediatric mortality and end-of-life care [1, 2], and has subsequently been applied to a variety of research problems, including risk adjustment, prediction of adverse health outcomes, and identification of populations with high health care utilization [3-27].
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The original CCC system, now more than a decade old, warranted revision for 3 main reasons. First, the International Classification of Disease 10th Revision (ICD-10) is replacing the ICD-9 system in the United States. Although already widely used internationally, ICD-10 was first used in the Centers for Disease Control and Prevention vital statistics data files in 1999, and government diagnostic and procedural billing codes will change to ICD-10 in 2015. Second, the original CCC system has not been updated to include new diagnostic codes added over the past decade, and in particular the original CCC system does not include a category for conditions originating in the neonatal period. Third, the original CCC system consisted entirely of diagnostic codes and lacked a domain of codes that specify either a likely dependence upon medical technology or having undergone organ (including bone marrow) transplantation, both of which would indicate CCC status.
In this study, we report on our updated CCC version 2 (v2) classification system, which we implemented for both the ICD-9 and ICD-10 coding schemes. We evaluated the CCC v2 system in three ways: 1) the comparability between the ICD-9 and ICD-10 systems; 2) the year-to-year stability of classification across CCC v2 attributable to cause of death in 1991-2010; and 3) the proportions of patients classified as having a CCC between CCC v2 and CCC v1 systems.
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