Dennis Z. Kuo

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.

Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals.

CONTEXT Early hospital readmission is emerging as an indicator of care quality. Some children with chronic illnesses may be readmitted on a recurrent basis, but there are limited data describing their rehospitalization patterns and impact. OBJECTIVES To describe the inpatient resource utilization, clinical characteristics, and admission reasons of patients recurrently readmitted to childrens hospitals. DESIGN, SETTING, AND PATIENTS Retrospective cohort analysis of 317,643 patients (n = 579,504 admissions) admitted to 37 US childrens hospitals in 2003 with follow-up through 2008. MAIN OUTCOME MEASURE Maximum number of readmissions experienced by each child within any 365-day interval during the 5-year follow-up period. RESULTS In the sample, 69,294 patients (21.8%) experienced at least 1 readmission within 365 days of a prior admission. Within a 365-day interval, 9237 patients (2.9%) experienced 4 or more readmissions; time between admissions was a median 37 days (interquartile range [IQR], 21-63). These patients accounted for 18.8% (109,155 admissions) of all admissions and 23.2% (

A National Profile of Caregiver Challenges Among More Medically Complex Children With Special Health Care Needs

3.4 billion) of total inpatient charges for the study cohort during the entire follow-up period. Tests for trend indicated that as the number of readmissions increased from 0 to 4 or more, the prevalences increased for a complex chronic condition (from 22.3% [n = 55,382/248,349] to 89.0% [n = 8225/9237]; P < .001), technology assistance (from 5.3% [n = 13,163] to 52.6% [n = 4859]; P < .001), public insurance use (from 40.9% [n = 101,575] to 56.3% [n = 5202]; P < .001), and non-Hispanic black race (from 21.8% [n = 54,140] to 34.4% [n = 3181]; P < .001); and the prevalence decreased for readmissions associated with an ambulatory care-sensitive condition (from 23.1% [62,847/272,065] to 14.0% [15,282/109,155], P < .001). Of patients readmitted 4 or more times in a 365-day interval, 2633 (28.5%) were rehospitalized for a problem in the same organ system across all admissions during the interval. CONCLUSIONS Among a group of pediatric hospitals, 18.8% of admissions and 23.2% of inpatient charges were accounted for by the 2.9% of patients with frequent recurrent admissions. Many of these patients were rehospitalized recurrently for a problem in the same organ system.

Inpatient Growth and Resource Use in 28 Children's Hospitals: A Longitudinal, Multi-institutional Study

OBJECTIVES To profile the national prevalence of more medically complex children with special health care needs (CSHCN) and the diversity of caregiver challenges that their families confront. DESIGN Secondary analysis of the 2005-2006 National Survey of Children With Special Health Care Needs (unweighted n = 40 723). SETTING United States-based population. PARTICIPANTS National sample of CSHCN. MAIN EXPOSURE More complex CSHCN were defined by incorporating components of child health and family need, including medical technology dependence and care by 2 or more subspecialists. MAIN OUTCOME MEASURES Caregiver challenges were defined by family-reported care burden (including hours providing care coordination and home care), medical care use (on the basis of health care encounters in the last 12 months), and unmet needs (defined by 15 individual medical care needs and a single nonmedical service need). RESULTS Among CSHCN, 3.2% (weighted n = 324 323) met criteria for more complex children, representing 0.4% of all children in the United States. Caregivers of more complex CSHCN reported a median of 2 (interquartile range, 1-6) hours per week on care coordination and 11 to 20 (interquartile range, 3->21) hours per week on direct home care. More than half (56.8%) reported financial problems, 54.1% reported that a family member stopped working because of the childs health, 48.8% reported at least 1 unmet medical service need, and 33.1% reported difficulty in accessing nonmedical services. CONCLUSIONS Extraordinary and diverse needs are common among family caregivers of more complex CSHCN. Enhanced care coordination support, respite care, and direct home care may begin to address the substantial economic burden and the multiple unmet needs that many of these families face.

Characteristics of Hospitalizations for Patients Who Use a Structured Clinical Care Program for Children with Medical Complexity

OBJECTIVE To compare inpatient resource use trends for healthy children and children with chronic health conditions of varying degrees of medical complexity. DESIGN Retrospective cohort analysis. SETTING Twenty-eight US childrens hospitals. PATIENTS A total of 1 526 051 unique patients hospitalized from January 1, 2004, through December 31, 2009, who were assigned to 1 of 5 chronic condition groups using 3Ms Clinical Risk Group software. INTERVENTION None. MAIN OUTCOME MEASURES Trends in the number of patients, hospitalizations, hospital days, and charges analyzed with linear regression. RESULTS Between 2004 and 2009, hospitals experienced a greater increase in the number of children hospitalized with vs without a chronic condition (19.2% vs 13.7% cumulative increase, P < .001). The greatest cumulative increase (32.5%) was attributable to children with a significant chronic condition affecting 2 or more body systems, who accounted for 19.2% (n = 63 203) of patients, 27.2% (n = 111 685) of hospital discharges, 48.9% (n = 1.1 million) of hospital days, and 53.2% (

Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems

9.2 billion) of hospital charges in 2009. These children had a higher percentage of Medicaid use (56.5% vs 49.7%; P < .001) compared with children without a chronic condition. Cerebral palsy (9179 [14.6%]) and asthma (13 708 [21.8%]) were the most common primary diagnosis and comorbidity, respectively, observed among these patients. CONCLUSIONS Patients with a chronic condition increasingly used more resources in a group of childrens hospitals than patients without a chronic condition. The greatest growth was observed in hospitalized children with chronic conditions affecting 2 or more body systems. Childrens hospitals must ensure that their inpatient care systems and payment structures are equipped to meet the protean needs of this important population of children.

Children With Medical Complexity And Medicaid: Spending And Cost Savings

OBJECTIVE To describe the characteristics of hospitalizations for patients who use clinical programs that provide care coordination for children with multiple, chronic medical conditions. STUDY DESIGN Retrospective analysis of 1083 patients hospitalized between June 2006 and July 2008 who used a structured, pediatric complex-care clinical program within 4 childrens hospitals. Chronic diagnosis prevalence (ie, technology assistance, neurologic impairment, and other complex chronic conditions), inpatient resource utilization (ie, length of stay, 30-day readmission), and reasons for hospitalization were assessed across the programs. RESULTS Over the 2-year study period, complex-care program patients experienced a mean of 3.1 ± 2.8 admissions, a mean length of hospital stay per admission of 12.2 ± 25.5 days, and a 30-day hospital readmission rate of 25.4%. Neurologic impairment (57%) and presence of a gastrostomy tube (56%) were the most common clinical characteristics of program patients. Notable reasons for admission included major surgery (47.1%), medical technology malfunction (9.0%), seizure (6.4%), aspiration pneumonia (3.9%), vomiting/feeding difficulties (3.4%), and asthma (1.8%). CONCLUSIONS Hospitalized patients who used a structured clinical program for children with medical complexity experienced lengthy hospitalizations with high early readmission rates. Reducing hospital readmission may be one potential strategy for decreasing inpatient expenditures in this group of children with high resource utilization.

Family Experiences and Pediatric Health Services Use Associated With Family-Centered Rounds

Understanding a care coordination framework, its functions, and its effects on children and families is critical for patients and families themselves, as well as for pediatricians, pediatric medical subspecialists/surgical specialists, and anyone providing services to children and families. Care coordination is an essential element of a transformed American health care delivery system that emphasizes optimal quality and cost outcomes, addresses family-centered care, and calls for partnership across various settings and communities. High-quality, cost-effective health care requires that the delivery system include elements for the provision of services supporting the coordination of care across settings and professionals. This requirement of supporting coordination of care is generally true for health systems providing care for all children and youth but especially for those with special health care needs. At the foundation of an efficient and effective system of care delivery is the patient-/family-centered medical home. From its inception, the medical home has had care coordination as a core element. In general, optimal outcomes for children and youth, especially those with special health care needs, require interfacing among multiple care systems and individuals, including the following: medical, social, and behavioral professionals; the educational system; payers; medical equipment providers; home care agencies; advocacy groups; needed supportive therapies/services; and families. Coordination of care across settings permits an integration of services that is centered on the comprehensive needs of the patient and family, leading to decreased health care costs, reduction in fragmented care, and improvement in the patient/family experience of care.

Hospital-Based Comprehensive Care Programs for Children With Special Health Care Needs: A Systematic Review

A small but growing population of children with medical complexity, many of whom are covered by Medicaid, accounts for a high proportion of pediatric health care spending. We first describe the expenditures for children with medical complexity insured by Medicaid across the care continuum. We report the increasingly large amount of spending on hospital care for these children, relative to the small amount of primary care and home care spending. We then present a business case that estimates how cost savings might be achieved for children with medical complexity from potential reductions in hospital and emergency department use and shows how the savings could underwrite investments in outpatient and community care. We conclude by discussing the importance of these findings in the context of Medicaids quality of care and health care reform.