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. 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. The updated CCC v2 system is comprehensive and multidimensional, and provides a necessary update to accommodate widespread implementation of ICD-10.

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Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation

OBJECTIVES: The goals were to determine whether there has been an increase in the rate of venous thromboembolism (VTE) in pediatric tertiary care hospitals and to evaluate the use of anticoagulants in the treatment of hospitalized pediatric patients with VTE. METHODS: A retrospective cohort study of patients RESULTS: During the 7-year study period, in which 11337 hospitalized patients were diagnosed with VTE, the annual rate of VTE increased by 70%, from 34 to 58 cases per 10000 hospital admissions (P CONCLUSION: This multicenter study demonstrates a dramatic increase in the diagnosis of VTE at children9s hospitals from 2001 to 2007.

Dramatic increase in venous thromboembolism in children's hospitals in the United States from 2001 to 2007.

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation While pediatric patient self-report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, and reliable and valid parent proxy-report instruments are needed in such cases Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization Data from the PedsQL™ DatabaseSM were utilized to test the reliability and validity of parent proxy-report at the individual age subgroup level for ages 2–16 years as recommended by recent FDA guidelines The sample analyzed represents parent proxy-report age data on 13,878 children ages 2 to 16 years from the PedsQL™ 40 Generic Core Scales DatabaseSM Parents were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which their children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 3,718, 268%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 10,160, 732%) The percentage of missing item responses for the parent proxy-report sample as a whole was 21%, supporting feasibility The majority of the parent proxy-report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 070 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 090 recommended for analyzing individual patient scale scores Construct validity was demonstrated utilizing the known groups approach For each PedsQL™ scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range The results demonstrate the feasibility, reliability, and validity of parent proxy-report at the individual age subgroup for ages 2–16 years These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable Even as pediatric patient self-report is advocated, there remains a fundamental role for parent proxy-report in pediatric clinical trials and health services research

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Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales.

Executive Summary Introduction Methods Goals, Timing, and Settings for Palliative Care Decision-making Process Advance Directives Care Planning and Delivery Hospice Care Alternative End-of-Life Decisions Symptom Management Dyspnea Management Pain Management Management of Psychological and Spiritual Distress and Suffering Withdrawal of Mechanical Ventilation Process of Decision Making Process of Withdrawing Mechanical Ventilation Bereavement Care Barriers to Palliative Care Program Development, Education, Training, and Research in Palliative Care

An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses

Children with special health care needs (CSHCN), defined as children who have or at risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or an amount beyond that required by children generally, constitute 18% (~12.6 million) of US children.1 The Institute of Medicine has identified CSHCN as a priority population,2 in part because of their use of health resources. A small proportion of children account for the bulk of health care expenditures in the United States: 20% of children who use medical services account for ~80% of all children's health care expenditures.3

Chronic illness accounts for the majority of children's hospital days and dollars.4 A smaller set of CSHCN, termed medically complex children, are perceived to use a disproportionate amount of resources, particularly in the inpatient and tertiary care settings.5 Consistent and complete identification criteria of this subpopulation for administrative, clinical, and research purposes, however, remains elusive.5–7 A prototypical medically complex child has a diversity of conditions and multisystem disease; may be technology-dependent; has frequent inpatient admissions; and requires multiple medications, multiple subspecialists, and optimal care coordination across inpatient and outpatient settings.5 Previous work describing the 6.5% of children with disabilities,8,9 the nearly 5% of children with multiple chronic conditions,10 or children with technology dependence5 likely described sets of children with some degree of medical complexity.

For accurate attribution of health care use of medically complex children, an operational definition is needed for use in administrative data sets. One potential method to study medically complex children is to group International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes so as to specify a set of complex chronic conditions (CCCs). Developed initially for the purpose of identifying children who are at risk for death,11–15 the working definition for a CCC was “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 system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center.”11 Although CCCs likely do not capture all medically complex children, the definition and implementation of the CCC scheme incorporates 3 hallmarks of medical complexity: chronic medical conditions, often existing in comorbid combinations, and associated with intensive inpatient use. In this study, we sought to determine whether the proportion of pediatric inpatient use for CCCs increased over time from 1997 to 2006 and to assess the degree to which hospitalizations of patients with CCCs were associated with use of inpatient health care resources and outcomes consistent with heightened medical complexity.

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Children With Complex Chronic Conditions in Inpatient Hospital Settings in the United States

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.

https://pediatrics.aappublications.org/content/pediatrics/107/6/e99.full.pdf

Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services.

Purpose: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999–2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient–provider communication using the Decision-making Tool (DMT) and experimented with comanagement by clinicians and insurers to support decisionmaking in advanced serious pediatric illness. Design: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a nonexperimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months postprogram entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL™ Version 4.0, and...

Gerri Haynes

Papers

Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services.

The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life.