Washington, D.C. – Today, Children's Hospital Association (CHA) announced findings from a landmark $23 million project designed to transform care delivery for children with complex medical conditions. Through Coordinating All Resources Effectively (CARE), a three-year 2014 round two Center for Medicare and Medicaid Innovation (CMMI) Award, 10 children's hospitals in seven states and D.C. collaborated with patient families, primary care physicians, managed care organizations (MCOs) and state Medicaid to implement innovative models of coordinated care. CARE significantly reduced hospital days by 32 percent and emergency department (ED) discharges by 26 percent across 8,000 enrolled children for a 2.6 percent reduction to Medicaid spending in the first full year of operation.
"Through the CARE Award, physicians and children's hospitals set out to improve how we care for this vulnerable population of children, not only in while they were hospitalized, but in primary care settings, specialty clinics and their own homes," explains Amy Knight, CHA's chief operating officer. "Given the population of children with complex medical conditions is small, we needed to look at children nationwide to learn together. Our effort to transform their care across geographies and the continuum of care as well as in their communities is unprecedented."
While each of the 8,000 enrolled children is unique, most of their health care costs are for similar services including ED visits, inpatient days, mental health, home health and prescriptions totaling, on average, $50,000 per patient annually. Because children with complex medical needs require multiple pediatric specialties, they largely rely on the physicians who work in children's hospitals for these services.
As many as 3 million children throughout the country have complex medical conditions like cerebral palsy, cystic fibrosis, congenital heart disease or cancer resulting in frequent ED visits and subsequent hospitalizations. These children account for one-third of total health care spending and 40 percent of Medicaid's total spending on kids. Without specially designed care coordination across providers, parents end up serving as the information hubs for their children's primary care providers, pediatric specialists, therapists and social workers.
"One of the key aspects of CARE is taking the burden off the backs of families who are spending, in some cases, 10-20 hours a week doing care coordination for their children and providing them that service," says David Bergman, M.D., medical director for CARE and associate professor of pediatrics at Lucile Packard Children's Hospital Stanford in California.
"I was excited to meet people who were aware of challenges and problems that families of children with complex medical needs encounter and who wanted to help," adds Monica Jones, a parent to two children with the rare disease Generalized Arterial Calcifications who are treated at Children's Hospital of Philadelphia. "They understood that it is not just the medical side of all the changes and challenges that families experience as soon as they receive the report about their child's condition. Everything is subject to change: finances, job stability, housing, family dynamics and how to balance the time given to siblings."
More than 50 teams across 10 children's hospitals, including patient family members, collaborated with over 40 primary care practices to implement key changes, driving results:
- A comprehensive set of clinical care and cost data of all enrolled patients in one place
- Dynamic, effective and coordinated care teams of physicians, families, and other care providers
- Individualized medical care plans with family-focused goals for every patient, helping them get the care needed when they needed it, and when appropriate, providing it themselves
Children's hospitals worked with Medicaid state agencies and Medicaid MCOs to review patient claims data to help change how physicians and hospitals were paid, supporting better care coordination. These payment models ranged from shared savings to providing support for care coordination and program infrastructure.
For the children's hospitals in CARE, expanding the definition of care coordination was a step in the right direction, recognizing patient care doesn't exist only within their walls, but among a broader community of caregivers. "Coming up with payment models is very challenging not just for resources that hospitals need but for identifying the community, government and payer partnerships that can address the care needs for the child outside of the hospital," explains Mark Wiessman, M.D., chief of general pediatrics and community health at Children's National Health System in Washington, D.C. "CARE puts children and families at the center of care, identifying what their goals are not just for today but for their future."
By working together and with CHA, through educational events and journal publications, these 10 children's hospitals will share CARE’s evidence-based findings with pediatric providers, patient advocacy groups and public policy experts. CARE joins nine additional three-year CMMI projects related to children with complex medical conditions in forming a strong foundation of knowledge and experience for care transformation to expand to communities across the country.
"CARE accelerated our learning of how we design a system of integrated, coordinated care to better serve a growing population of children with complex conditions," explains Knight. "This kind of transformation drives value for everyone involved – patients, families, providers, states and payers."
For more information on CARE results, download the CARE Award executive summary at www.childrenshospitals.org/care.
CARE Participating Children's Hospitals:
Children's Hospital Colorado, Denver, Colo.
Children's Hospital of Philadelphia, Philadelphia, Pa.
Children's Mercy, Kansas City, Mo.
Children's National Health System, Washington, D.C.
Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
Cook Children's Health Care System, Fort Worth, Texas
Lucile Packard Children's Hospital Stanford, Palo Alto, Calif.
Mattel Children's Hospital UCLA, Los Angeles, Calif.
St. Joseph's Children's Hospital of Tampa, Tampa, Fla.
Wolfson Children's Hospital, Jacksonville, Fla.